It's my life: Life as a disabled person in a mainstream world

The challenge of finding suitable clothing for a wheelchair user

2012-02-23T17:59:00.000Z

I have decided to write a post related to the issues around disabled people getting suitable clothing, as this is something I find very difficult due to my shape and size. I have a very short body and broad shoulders (that is a very simplistic description) on top of this I struggle with my weight and so this also doesn't help when finding clothes as I need slightly larger than average clothes to start with anyway.

I am sure I am not the first and definitely wont be the last who have had this problem. I have had massive issues finding a coat that is suitable for my needs. One problem I have is finding clothes that are suitable for the top half of my body. I have very broad shoulders as mentioned above and although I might be a certain size everywhere else I always have to get larger than I would like when buying clothing to make sure I can fit my shoulders in.

I searched on the internet for coats suitable for wheelchair users and as you can imagine it came up with all sorts of unsuitable suggestions, including a cape that goes over a wheelchair. For some, this would be exactly what they are looking for but for me I want something that is fashionable, that looks like what my able bodied friends would wear. I want a coat that looks 'normal'. Now in theory that is what I have got, but it is not a great fit, it is 'best fit'. This could lead onto a whole new discussion about what is best fit, or fit for purpose as I am sure many of you have lives where much of the equipment or system that you have to use are not fit for purpose and are having to use a best fit approach which is not always appropriate for individuals needs. I will leave that discussion there for now but feel free to comment about this issue.

This is what happened when attempting to get a coat. My previous coat that I had, was completely past it and should have been replaced ages ago, but I just couldn't do it. Now this wasn't just because it was a nice coat, but because of the wider issue of knowing that trying to find something that was suitable was going to be a challenge to say the least. Every piece of clothing that I have is not the perfect fit, it is the best I could find. If I had a lot of money I could spend money on a personal tailor etc, but I haven't got that sort of money so I can't.

I finally got to the point I couldn't ignore the condition of my coat and got rid of it due to the lining being ripped and went out to get another one thinking it wouldn't be that much of a challenge to get one. Then it dawned on me, stock was low due to it being the end of season. So I persevered and tried to find a coat that was suitable.

In every shop I went there was a billion size 8 coats (are people really that size anymore?) I then gave up going around all the shops as this provides challenges in itself, not just simply how tired I become but also how inaccessible many can be, against my better judgement I looked online for a coat. I found a coat that was my size (or so it should be) and so went ahead and ordered it. When it arrived I found that I should have trusted my instincts and not brought one over the internet, because you guessed it; it was too small!

I as so many other disabled people do much of their shopping online now as it makes their life so much easier, but unfortunately there is no comparison to be able to go and see the items in the flesh. Although there are many times I have done that, I often come away feeling like I might as well just looked online. This is because even when I have found something I haven't necessarily been able to try the items on, due to inaccessible changing rooms and unhelpful staff making me feel like I shouldn't be in their shop anyway.

So the saga continued, I decided to take another look around the shops before giving up for this year and in turn becoming very down beat about the experience, fashion is something I have struggled with like most women out there but I always feel that there is such a bigger issue because I am disabled and it is made so much harder to be fashionable and when you try you are made to feel like you shouldn't (this could have been a very different post if I had been unsuccessful in my search).

I finally found one in a shop and there was one in a size that would fit (as mentioned above this was not a perfect size). It was actually a great find in the end as it was cheap and also because there was a small amount of damage I got an even bigger discount which was even better. It isn't the best coat but at least it will do me for now. This is just one example, but I regularly end up getting clothing that isn't a perfect fit for the reasons already mentioned and wonder whether this will ever change. Is it so wrong for disabled people to want to be fashionable?

I hope that this post has helped you to realise it isn't just you who have these dilemmas and that in turn we can learn from each others experiences. I hope it leads to a further discussion from people who read this post. I would like to know what you do? and what problems you have finding items that are suitable for your needs? be it, clothing or other such items. I look forward to hearing about your experiences and hope you have enjoyed hearing about mine.

Understanding how lucky I am

2012-02-21T10:08:00.000Z

Over the past year I have learnt much about myself and other people and so I need to take a moment to reflect on my experiences and in essence how lucky I am to have the life that I do. So many people have to deal with so many more injustices than myself, which I can only begin to imagine the effect that this has. I have made the effort to learn about other sick and disabled peoples lives, to allow me to appreciate what others go through on a daily basis. This learning has made me realise that things are not always clean cut as they seem, leading to me having a greater empathy for people in different situations. I have done my learning through talking to people on social networking sites like Twitter, as well as through listening and taking note of the news and the media as a whole.

There have been a number of different items in the media about disabled people which I feel is another reason I have learnt to question what I am told and find out the truth, as unfortunately much of what the media portrays is not the truth, as you can imagine this adds to the feeling of inequality. As I learn more I gain confirmation of how lucky I am, yes I am disabled and have many problems to deal with but this is nothing compared to the troubles that many sick and disabled people have to face.

Then you have the problem of the way that the media reports those who claim benefits, only ever focusing on those that abuse the system, as I write this I have 'Fake Britain' on in the background with exactly this subject being discussed. Sadly there is abuse of the system, but not to the extent that the government is trying to claim. The majority of claimants are genuine and if they didn't have this money they wouldn't be able to live, life is hard enough as it is so why should it be made harder for those who live through adversity. Rarely are the true problems of living with a disability reported, which leads to many disabled people, including myself feeling like we don't have a voice and wish that I had more of a voice, but at least I feel I am heard more than some.

There has been one good thing come out of media coverage and that is showing the truth about what really goes on in care homes. Panorama reported on the abuse which was occurring at a hospital for adults with learning disabilities. It was shocking to see some of the things carers got away with and unbelievable to think it was allowed to go on for as long as it has done. Panorama has put such abuse into the forefront of peoples minds and has made people sit up and listen to what really is happening and for this I am hopeful that some of the abuse that occurs will stop and be challenged. The sad thing about what has been occurring at this facility is that I am sure it is not the only place that allows such awful things to happen. Again this made me realise how lucky I am because I have not had to go through such an ordeal and will never have to due to the nature of my disability and the support network that I have, whereas it is the harsh reality for to many people living with disability and illness.

I have had negative experiences throughout my life but from them I have grown as a person and only recently have realised that I can use some of my negative experiences to help others and campaign for change. Recently I was in my local pub and there was a man who I hadn't seen before and he started to get involved in conversations that were being had by the people I was with. I have recently been getting on a bar stool with help from friends, so that I am truly involved in all that goes on at the bar, rather than be someone on the outside looking in. After a while I decided that I needed to go to the toilet so got back in my wheelchair and headed to the toilet. It wasn't till I got back that he started to treat me noticeably different, using phrases like 'trapped in my wheelchair' and generally looking at me with a pitying look. This experience set me back a little bit because I hadn't had people say things like that to me for a while and so wasn't really prepared. The next day I went in the pub again and spoke to the landlord and lady about my experience the night before explaining how it made me feel and their reaction was great, I felt valued and realised how lucky I was to have friends like these. The man who upset me came in while I was there and he was told quite nicely he was not welcome and told to leave which just confirmed that feeling that I was valued.

When I speak about people who are sick AND disabled I am referring to those people who often have hidden disabilities like M.E. My disability is a physical one and so people can see the difficulties that I may have, but those who have hidden disabilities are grossly misunderstood and treated extremely unfairly. This can be seen when looking at Employment Support Allowance (ESA). ESA is split into two main categories, that of which is for people who are unable to work and that which is for people who it is anticipated that they would be able to work at some point. This sounds fair until the stories of people who really aren't 'fit for work' are found to be. It has been made one of the hardest benefit to get, and the assessment process is ridiculously flawed, the form is complicated and if the claim gets as far as having to attend an assessment it is completed by someone who has no medical knowledge in an appointment that lasts only 20 minutes and they take everything literally even when the person being assessed may have insight problems and is not fully aware of all that they cant do. As I said at the beginning this makes me realise how lucky I am. I may be in a low paid job and feel trapped at times, but at least I am able to work and have a job unlike many people who are seen as 'fit to work' as well as an employer through all their faults are flexible and encouraging.

I was talking last night to some friends about the problems I and others face and what it is to be different. We were discussing what it was meant to be 'normal', I explained that what I mean by this is to be an equal part of something and not to be treated differently. In many situations I am lucky that I feel normal but there are times and will always be that I do not feel normal quite simply because of the way that I am treated. We were also discussing the abuse of the system and how it is those who really need the support that don't receive it. Over the past few weeks I have grown closer to the people I was with last night and I feel I am beginning to make them understand some of these problems that I face. They are all in support of me and agreed there are some people who abuse the system, which they do not feel is right because they see there are people who are more deserving than someone who doesn't make any effort to find work, the group of people I was talking to know someone like this and they are losing any respect that they had for this person.

The above are just some of the things that I have experienced over the past while that have firstly made me realise how lucky I am but secondly that I need to continue to fight for those who are worse of than me because it is often not that easy for them to show they have a voice. I will continue to open my eyes to other people and the difficulties they face with the hope that I can help support them to challenge and campaign for change. On my own I have a small voice, together we can work towards change.

Making the decision to become a mother with a disability

2012-02-11T11:15:00.000Z

I started writing a blog back when I was having some serious problems with my depression and needed a way to vent how I was feeling in a constructive manner. Since then my blog has grown and I am able to write about a variety of different issues, not just from my point of view but that of others. I mentioned in a post recently about parenthood and explained how this will be something that I will blog about in the future.

Well we have started trying for a baby, it is early days and so as yet we have not been successful. That is part of the reason I felt that I needed to write today as yesterday was the first full month since I came off birth control and so when my period came I did feel rather disappointed. Deep down I didn't expect it to happen that quickly but my reaction to this happening made me realise how much I want a child.

Before I met my husband Dave, I had never imagined having children and I always thought that it wouldn't happen. This was partly due to just being the person that I am, but I am now realising that some of this was because I was always led to believe people with a disability were not meant to be parents. As I have grown older I am now able to see that it is possible and a number of different people in different circumstances are having children with varying levels of support. Although this is the case it is still hard for me to know if I am making the right decision about having children, do all potential mothers feel this way?

Some of my main concerns are how I will cope with being pregnant physically and mentally. As I mentioned above was the reason I started writing this blog was due to suffering with depression. My hormones were all over the place yesterday just through being on my period and to be honest I was an emotional wreck for no apparent reason. So if it was this bad now, how is it going to be for the 9 months that I am pregnant? How will I cope with it? I have learnt to manage my depression most of the time and I am able to recognise the signs much earlier than I once was but will I be able to manage it that well when my hormones are all over the shot, all of the time?

Secondly it is the physical strain of being pregnant. I am a full time wheelchair user and so my arms are everything to me. I already have some problems with my back and shoulders, so this is not going to help. Will I be able to stay as independent as I am now or will I have to become even more reliant on people especially my husband. This is something that I don't want to happen and so I am hoping that it doesn't come to this.

Throughout my life I have had a number of health problems, and as far as I am concerned my health is more stable than it was as a child and so so this shouldn't be a problem. But what if my health deteriorates? We have had to have that harsh discussion and we do agree that although this is something that we really want, if my health was being put at risk too much then my health has to come first. That opinion may not be popular with some of my readers but until you are put in the position where it is something you have to think about I would ask that you don't judge my decision on this issue.

Then there is how I will cope when the baby comes. I am not actually as worried about this as I first was, because I have done my research. Google is a wonderful tool, there is so much information and ideas about how to do things that this part of it has been made much easier for me. It's the emotional and physical strain that people can't prepare you for, but then isn't that the same for anyone with or without a disability?

My parents are openly worried about me also which provides me with even more to think about because I don't want to upset them and feel like I am going behind their back. Although they have said that they will support me in whatever I decide as they always have and always do, which made it easier for me to go ahead with the decision to have children. At the end of the day I am their baby and they don't want to see me hurt.

Coming back to what I want for a moment. So having said my concerns, why am I going through with it you may ask? There is no straightforward answer to that, all I know is that it is something that I really want and when I realised I wasn't pregnant yesterday I was so upset that it made me realise I wasn't just doing it for other people, because that was expected of me but because I really want to be a mother and have all the experiences (good and bad) that all mothers do.

So all I can do for now is stay on the ride and lets see where it takes me. At the end of the day we may not be able to have a child for all sorts of different reasons and so for now I just need to keep going and not worry too much about what is around the corner. I have always come out the other side and will do so again which ever way life takes me.

Does the Equality Act help disabled people in Employment?

2012-02-07T10:12:00.000Z

In 2010 the Equality Act replaced the Disability Discrimination Act 1995. The Equality Act is to cover more areas of an individuals life not just employment like the Disability Discrimination Act did previously. One of my main concerns is how a number of different minority legislation's have been lumped into one and that this is meant to be sufficient, wont this make the current Act less flexible? limiting those who are seen as having a disability as not all individuals fit nicely into a category of impairment. So does the Equality Act really work?

I have come to recognise that there is a mixed view on whether it really works or not depending on the individuals that are spoken to, especially with regards to reasonable adjustment within the workplace. When speaking to officials (including trade union officials who deal with case work) they can not speak highly enough of the Act and are able to state that as a result of the legislation they have been able to resolve a number of case work issues. This is great but why cant this be the same for everyone whether you have representation or not? I have also spoke with a number of people who haven't been helped by this legislation because one of the biggest flaws is the interpretation of reasonable adjustment especially in the case of the employee against the employer, as this is sadly the time it fails the most because the employer doesn't have to improve things if they are seen to have tried. This situation often leaves disabled people feeling like they have no choice but to leave the employment.

The Equality Act states some wonderful points about how an individual can be protected by this Act and I have even found some examples as to what could be described as discrimination under the Act. But in reality, it is sad to say that what the Act claims and what it is actually achieving does not seem to correlate.

So what does the Equality Act claim? Firstly the new Equality Act isn't just talking about disability it is putting all the discrimination laws together. So as mentioned above how can this be better, surely something is going to be missed and suffer as a result of lumping the different laws into one act. These are the differences according to the DWP:

" The EA generally carries forward the protection provided for disabled people by the DDA. However, there are key differences.

The DDA provided protection for disabled people from direct discrimination only in employment and related areas. The EA protects disabled people against direct discrimination in areas beyond the employment field (such as the supply of goods, facilities and services).

The EA introduced improved protection from discrimination that occurs because of something connected with a person’s disability. This form of discrimination can be justified if it can be shown to be a proportionate means of achieving a legitimate aim.

The EA introduced the principle of indirect discrimination for disability. Indirect discrimination occurs when something applies in the same way to everybody but has an effect which particularly disadvantages, for example, disabled people. Indirect discrimination may be justified if it can be shown to be a proportionate means of achieving a legitimate aim.

The EA applies one trigger point at which there is a duty to make reasonable adjustments for disabled people. This trigger point is where a disabled person would be at a substantial disadvantage compared to non-disabled people if the adjustment was not made.

The EA extends protection from harassment that is related to disability. Previously, explicit protection only applied in relation to work. The EA applies this protection to areas beyond work.

The EA provides protection from direct disability discrimination and harassment where this is based on a person’s association with a disabled person, or on a false perception that the person is disabled.

The EA contains a provision which limits the type of enquiries that a recruiting employer can make about disability and health when recruiting new staff. This provision will help prevent disabled candidates from being unfairly screened out at an early stage of the recruitment process. "

So why, if these new changes are so great is there still a big problem and in particular misunderstanding towards what is reasonable adjustment? The answer is quite simple that 'reasonable adjustment' is open to interpretation and is able to be interpreted in such a way that the disabled person is not favored. It is the disabled individuals word against a corporate organisation that have professionals who are trained in finding loop holes to sticky situations that they have found themselves in.

Looking above at the differences the DWP have raised, who decides whether the discrimination that occurs is because of something connected with a person’s disability, how is this decided? If an employer doesn't want to see the problem then its not that hard to challenge the claim the treatment is as a result of a disability or not as the case may be.

Over the last year and over the coming months more individuals with a disability will be found fit for work. This will mean that there will be more people trying to find work. This in itself causes a problem with regards to discrimination. As I have experienced myself it becomes much harder to get a job for a number of reasons. Not only are you more limited to the type of job that you can do, but even if you apply for a job and get an interview you are less likely to get the job. An example I always give here is if you have two applicants for a job with exactly the same experience and qualifications but one has a disability and the other does not, which one would you employ? I think we all know the answer to that.

Many individuals with a disability would like to work but they need support and understanding to do so, individuals do get lucky with employers and there are individuals with a disability who are successful in work but unfortunately they are in the minority. So going back to my original thought, about the Equality Act is it really working? I feel that it is not working in far too many situations.

So how can things change? is it just peoples attitudes to disability and if so what is needed? Would compulsory training help? unlikely as this would be difficult to implement due to the cost related. Unfortunately I do not have the answer to these questions all I know is that this system needs to be looked at seriously before telling individuals that they are fit for work when the employment market is not fit to take individuals with a disability.

How life gets in the way of living

2012-01-04T09:38:00.000Z

I started blog writing just over a year ago, initially I used it to focus my thoughts and it soon led to me writing more structured articles on issues that affect millions of disabled people. I was really pleased with the reaction I got from the previous posts that I wrote and have been meaning to write another one for many months, but as the title shows life sometimes gets in the way of living.

Over the past 5 months there have been a number of topics that I could have written about, but I haven't and I am not going to attempt to go back over old ground now. So why haven't I written a blog before now? There aren't any excuses really, apart from the usual 'too busy', but doing what you may ask? so I am not going to make excuses up. I suppose I have just got out of the habit of writing and so just need to get back to writing as I do enjoy the process when I finally do it, including the actual writing and response that I get from the writing that I do. I have been told that it only takes a month to break a habit, so hopefully this is true and I will be writing regularly again soon.

So I am setting myself a challenge for the next year to write at least one post a month, no exceptions. So rather than go over all that I have been doing over the past 5 months, I am just going to get you up to speed as to some of the main things that have been part of my life over the past 5 months and that continue to be part of my life and who I will become.

I have started to become more involved in campaigning at a number of different levels which has led to me making more decisions about my future career path, I am more actively looking for different employment now and although up to now I haven't had any luck I continue to look and apply. It is a challenging time for most and so I should be grateful for what I have but there comes a time when a change needs to be made and this is my time.

I have also been married now for almost a year and a half, which makes me very happy. The reason I am telling you this is that we have always spoken about having a child and so this may be the year so watch this space for more news on both of the topics I have mentioned.

Writing this post I am already thinking of other posts that could be written and so I promise that I will write again soon. I hope that you will come back soon to read my next instalments, but for now please look back over some of the issues I spoke about previously.

Please leave a comment about any other topics that you wish me to cover.

Is Access for Disabled People as good as it could be?

2011-08-21T18:14:00.000+01:00

The issue of Access is often a contentious one, if you talk to someone with a disability then there is always problems with not enough being done, yet if you talk to people in authority there are always excuses as to why more can not be done. I appreciate that there are times when it is not possible for there to be access to something be it the physical limitations of the person themselves (e.g. rock climbing) or through buildings being so old that they can't be adjusted enough to be fully accessible.

Although this is the case, organisations will often hide behind 'reasonable adjustment', expecting disabled people to just accept that as much is being done as possible. As mentioned above, I appreciate there are some limitations with buildings that are really old and that I will not be able to get everywhere that I may want to, but I still feel that often more can be done than is currently being done so. Companies should want to do as much as they can to include everyone (at the end of the day my money is as good as the next persons) Why do companies wait till they're forced to make changes? For example new trains are designed to be just like the old ones, but the old ones aren't practical, to make transport links more accessible changes need to be made, so why not start making those changes to the new trains that are being produced. Small steps but a big difference to someone in a wheelchair in the long term (that would mean one more train that I could get on without having to ask for help).

Attitudes to disability can be as limiting to access as much as the physical limitations of access. Recently I went to France for a holiday and before I even got to France I was feeling positive about the experience. I got to the Eurostar terminal at St Pancras and instantly there was a higher level of service than I regularly experience in the UK. An example of this was getting to a lift which was manned, I was given priority for the lift rather than having to wait for all the passengers who couldn't be bothered to use the travelator (which is something that seems to be a sad but regular experience for me. I understand that there are people with hidden disabilities who can't walk far etc, but the amount of people that I regularly see waiting at lifts tells me that they haven't all got disabilities and are abusing something that is there to help people with limited mobility.

I recently went to a concert, where people had crammed a lift to literally breaking point. The lift cut out and my husband had to climb up a flight of stairs to find someone to sort it out. On this occasion it was going to be unlikely that I was going to be on my own, but I may of been with a number of people unable to climb the stairs, then what would I have done? It is people who abuse systems in place that make it more difficult for those with a genuine need. People who aren't disabled see people abusing the system and so assume that everyone who is disabled is the same. This is just not true, disabled people need understanding and support and attitudes to change before they are able to really feel part of the society. Only will access not be seen as a problem.

At times I see wonderful attitudes as mentioned above the journey to France started well and it continued in the same vain. I got to the platform for the Eurostar Train and before I was anywhere near the carriage I was being asked what assistance I needed and they were onto immediately. When I arrived in Lille I was a little nervous, as my experience of UK special assistance is patchy to say the least BUT I was pleasantly surprised. There was someone there straight away who ensured that we were okay. We had some time in Lille so we went off before finding out what was needed for special assistance, but again we were pleased with what we saw. Someone was coming out to meet us before we were even going into the office, they helped us on to the train, and we were amazed at what we were greeted with on the train (it was obviously one of the newest because as we found out later they are not all as good) I had a choice of sitting in my wheelchair or sitting in a normal seat, this seat wasn't just a plain static seat that we get in the UK no, it swivelled round to make it easier for me to get on and reclined like all the other seats in carriage did also. I was amazed at the level of detail that had gone into this train but it weren't just that it was the attitude towards me as a customer like anyone else.

While in France we went to a theme park called Futuroscope, it is a theme park that is modelled on the future, using amazing technology for all the attractions. There was a number of attractions I could do without any problem at all, often missing out on lots of queuing etc because the only accessible entrance was different to everyone else (which I am definitely not complaining about!). There was a small number which I was unsure of the suitability, and so members of staff were asked. They were always really friendly and would let me look and decide for myself whether I felt they were suitable rather than being told they weren't. It was nice to have that control, because I am able to make my own decisions and although I would love to do everything I know that there are times when its just not possible and I accept that.

As mentioned in other posts, I have been disabled from birth, and have had to learn to grow up in a mainstream world, this has not always been easy as there have been a number of times when I have perhaps not had the same access to opportunities as my peers have. When at school I was always keen on sport and my teachers always did their best to get me involved, but when it came to joining in with sport outside of school it was always very hard. I would be pushed from pillar to post being told to speak with this person or that person. Rather than being embraced as a positive move towards inclusion I was always made to feel a problem where this and many other things in my are concerned. I have been involved in a number of different disabled sport camps as a child but when I wanted something more regular it just wasn't there. If my enthusiasm was noticed then who knows what I would have gone on to do.

One of the most positive experiences with sport has came as an adult, about a year and a half ago I decided that I wanted to have a go at tennis, so I contacted a local tennis centre and was happy to see the response provided. They admitted that they had no one in a wheelchair at the centre, but that they were happy to learn and give it a try. It is that 'can do' attitude towards something that can make all the difference and it definitely did on this occasion. Since then I have been going regularly and have gone to a couple of tennis camps which I have really enjoyed. I am too old for it to be life changing, but I feel positive that this is something that the only limit is how good I can naturally get. I would like to think that I may be able to participate in a tournament of sorts one day, even if it is just at a local novice level. Its the being able to join in without limitations being imposed rather than my wheelchair being the reason I cant do something it is the reason I can.

Disability sport doesn't always have a positive outcome like this as mentioned above as a child it was very difficult to join in, but things are improving slowly. Unfortunately I feel they are improving slower than they should, for example if you live in Holland and are in a wheelchair you are encouraged to try a sport, so much so that they will provide you with a wheelchair on a trial period. Time, money and energy are needed for the improvements to be made, but it is needed. Disability Sport is getting big all over the world, with sportsmen and women becoming role models and recognised as much as their able bodied counterparts but in this country you are lucky if five minutes of disability sport is shown in a programme that is 2-3 hours long. I understand that they are seen as minority sports, but my argument to that is how are attitudes going to change if this view isn't challenge. The media has the power to raise the profile of disability sport, yet they don't/won't. As long as the media does enough they don't care about the bigger picture.

For attitudes and access to improve people need to work together to make it happen, it wont happen over night and the coalition government and media aren't making it any better for disabled people, as we are one of the most vulnerable groups of people in society and should be being helped not pushed deeper into poverty towards second class living.

The coalition government has sunk to new lows, making it hard for some disabled people to survive financially let alone have any kind of life worth living. The welfare reforms are just another way for the government to cut money and the proposed changes will mean that most disabled people wont have enough money to survive, particularly as many disabled people have increased cost as a result of their disability, the increase cost is rarely predictable and so how can the government propose changes which are based on predictable care needs?

Living with a disability isn't just about the amount of benefits that can be received. Many people with disabilities would like to do some kind of work, but for a number of reasons are unable to do so. These reasons may be for health reasons but they may also be for societal reasons, as it is often much harder for a disabled person to get a job than it is for an able bodied person because the employer will see the disability first and will ignore the 'ability' of that person. This means disabled people are often more reliant on help from the state because whether they want to or not they can't get the work to be able to support themselves. This then becomes a vicious circle where a person with a disability cannot go out and spend money.

Even disabled people who are in work, often don't get a good deal, finding work that they are over qualified and under paid with very little career progression. Just because I am a wheelchair user doesn't mean that I don't have aspirations for more than I have got. We have had to purchase a flat, as a result of being in a low paid job and requiring a property with no stairs, as we wanted to be like everyone else our age and be able to own our home rather than having to rent. The place we are currently living in is too small, but we are stuck here until house prices rise. The next property we would like to get is a bungalow, but the way property prices at the moment this may be a while. In the meantime we have to continue as we are, with the hope that someone can see past my wheelchair and give me the opportunity for better employment prospects so that I can be an equal financial partner in our search towards what is more suitable to my needs.

So as you can see I don't just see access as physical problem, a lot of it is to do with the attitudes towards disabled people. I want opportunities as much as the next person, but need people and organisation willing to put the effort in to make it possible.

Is public transport suitable for disabled people?

2011-06-12T20:57:00.000+01:00

Welcome to my new followers, I am looking forward to some interaction from my followers as some already have. I have had an interesting weekend and some things I have heard through twitter has made me feel the need for another blog post. Some of the main topics being discussed include how disabled people are seen as 'benefit scroungers' and that of the experiences of disabled people and transport. I have spent time in previous posts speaking about how the media shows disabled people as benefit scroungers and so am not going to try and reinvent the wheel with that one. Instead I am going to discuss my experiences of public transport. I have mentioned this topic but not at great length and so feel it is appropriate to focus a whole post to this topic.

As previously mentioned I have been disabled from birth and so have experienced public transport in many different circumstances. When I was younger I was very reliant on being driven everywhere that I went. Many of the buses were inaccessible especially in my village and so did not have this option most of the time. At a young age there was the worry of getting taxis at night and so this wasn't really an option until a later age. Disabled people are given the opportunity to learn to drive when they are 16 years old because of the limited options that many disabled people experience and I am very grateful to be given the opportunity as it provided me independence I only dreamed of before I was driving. The option to drive so young was only made possible because of the Motability scheme, allowing many disabled people the opportunity for a level of independence. If this scheme was unavailable I would have never been able to drive so young and probably wouldn't be driving now making my opportunities to live a full life almost impossible under those circumstances.

The physical facilities for public transport has improved, many buses now have ramps or the option of level entrance and trains have ramps that can be put by the door, lifts at stations and even the tube system is becoming more accessible. Unfortunately even with the improvements made there are still many problems. The attitudes of staff and other passengers affects the accessibility of the public transport available. At one stage I decided to start using the bus service locally to get to work. I did this for many reasons, one of which was to limit some of the problems for my back when lifting my wheelchair in and out of the car. I did this for a couple of months, and there were times when it went well and I would even go so far as to say it was pleasurable. Unfortunately the times that were bad outweighed the good, which led to me deciding to go back to using my car on a daily basis and in turn putting strain on my back again. Each day I didn't know what I would find, sometimes I was nicely surprised being faced with a friendly bus driver and other passengers being helpful and friendly. On the days that I experienced bad journeys to and from work it was for a number of reasons. Some of the bus drivers attitudes towards me were poor, making me worry each time I saw it was specific drivers. They wouldn't be directly rude but they would react 'coldly' towards me, especially when the bus was busy. I also had some bad experiences with other passengers, in particular mothers with buggies which they weren't prepared to fold, keeping them in the space which is reserved for wheelchair users. Sometimes the driver would mention it and I was able to get on, but there were times when the bus driver quite obviously didn't care and so I was unable to get on the bus, having to wait for the next one. This made it difficult to use for work as I was time bound, to ensure I got to work in time I always left earlier than I perhaps needed to (this on it own would put people off) .

Train journeys are also something I choose not to do very often due to some of the difficulties that I have faced. This has meant that I have chose not to do certain activities because of this and so it has taken some of my independence away from me. For many years I would never use the train on my own because I was scared the process of special assistance would fail me, as it had many times before when I was with someone who was thankfully able to get someones attention if it was needed. Special assistance is put in place to prevent instances like this happening but sadly this system fails regularly for disabled people. Disabled people who require assistance are asked to ring at least 24 hours in advance, in return this should ensure that a disabled person and their needs are met fully unfortunately this rarely happens. I have found it is a lottery of train companies, some are much better than others. You can get on the train (usually after finding someone) but then you will get to your destination station and no one will be waiting for you! When you can't walk you can't get off the train to find someone and trains no longer have conductors. I have often thought that it would be simpler if Trains had a built in ramp on one carriage, similar to a bus, I have no doubt that the technology exists to do this it would just require someone to build it (I'm not holding my breath).

Despite this I have now got to the point, that my confidence has grown and I have now managed to go on the train independently (I have realised that if I am going to live my life then I need to bite the bullet even if it is challenging) and although I wouldn't say the process was completely smooth it was better than some of my earlier experiences and so although I wont do it very often by choice it has become more likely. This is the case for many situations of public transport, many of the changes that are needed are simple and more about the way I and other disabled people are treated rather than physical adaptation of equipment. Attitudes need to change with regards to this before anything really changes. It is societies problem as a whole not just the companies who run the transport systems (although this would be a good start).

I would like you to post comments with regards to this issue, sharing your experiences and starting a discussion as to what you think should be done to improve public transport for disabled people. The problems will continue to be problems until they are challenged. We need to work together for change.

What are the effects that the Media has had on Disabled Peoples lives?

2011-05-20T16:15:00.000+01:00

Disability in the media has always played an important role in shaping the lives of disabled people. For many years the only stories shown were that of sob stories and those who have achieved great things against the odds. There are two main areas of Disability and the media that I would like to cover. Firstly that of the effect the media has on disabled sport and secondly that of the news and the limited coverage of disabled people's issues.

Media and the effect that it has on disability is a hot topic for many at the moment, due to much of the media that is portrayed being of the negative persuasion. Disability is often in the media eye for many of the wrong reasons, and if not directly wrong reasons, it is usually for something like that of Oscar Pistorius where the discussion was around his ability and whether it would be fair for him to join mainstream sport. Unfortunately, there was a controversial thought that he would have an unfair advantage over his fellow able bodied athletes. His prosthetic limbs that are designed for running are done so in such a way to make it easier for him to move, so in some respects I can understand the idea that he will get an unfair advantage. On the flip side I would like to point out the difference in running style that he has to adopt to be able to use these limbs which is much harder for him than for his able bodied counterparts. To go the same distance, at the same speed he would have to go twice as hard. The way the media portrayed this story led to negative opinions about such inclusion and on a more general note just reiterates the lack of inclusion and how its acceptable. In the end it was decided that he would be able to run with his fellow able-bodied athletes but not before he had to fight for the right to be equal.

I would like to add at this point but will mention more later is the need for sensational television and disability only being identified at both ends of the scale. There is the pitied disabled person, who is unable to look after themselves. Then there is the person who has achieved greatness within their general expertise. The point just made can and may actually be another blog post by me in the near future.

Keeping on the subject of sport, there are many aspects that I feel the media fails at miserably when thinking about disability sport in the media. Next year is the year the Paralympics and the Olympics are coming to London and I am sure you are all aware about the hype given to those wanting tickets for the Olympics even if you are not that interested in sport but what about those who want tickets for the Paralympics? Do people even know when these tickets go on sale? How much media coverage has it received in relation to the Olympics?

The fact is ticket prices were announced on the 11th May (yes really) and tickets go on sale in September, but I am sure not many people realise this. The fact is the Olympic tickets were being discussed, advertised and generally unable to be forgotten about for around 6 months or more prior to them going on sale but there really hasn't been much at all about the Paralympics. The name Paralympics comes from running parallel to the Olympic games which, although well intended is in fact it is as far from the truth. The Paralympics is the Olympics poor relation which is exactly how many disabled people are made to feel on a daily basis when they are compared to their able bodied peers. This is also shown in relation to the coverage that other disabled sporting events have received in the past. All over the papers and television, footballers will be shown being reported for their personal and professional lives. There are a number of events throughout the year that disabled athletes participate in but rarely is this advertised. If there is any coverage it might be 2 hours on a Sunday afternoon for a competition that has been running for the last 2 weeks. The reason provided is that there isn't the demand, I would say they need to make the demand. Most able bodied sport that is shown on the television has the demand because of all the promotional hype that it is provided. If disabled sport was given the same level of advertising and was made to be part of normal life then perhaps it might be of interest to people.

People need to be educated about many different aspects of disability and the only way that this can be done is if it becomes a normal part of the able bodied society. Channel 4 are going to be the broadcasters for the Paralympics in the UK and admittedly they are trying to raise the profile of disability sport and promote positive views on disabled people. However when you look at what is being done for the Olympics, with endless hours of back-to-back coverage, multichannel output, interactive services. I'm sure Channel 4 will do a good job showing the Paralympics (they can't do a worse job than the BBC did 3 years ago), they don't have the same resources to dedicate to it.

There is still a long way to go before disability and in particularly disability sport becomes the norm, with people showing the right kind of interest. The way in which disability sport has been portrayed in the media up to now has added to the idea of pitying disabled people, regularly having the emphasis put on sob stories rather than the actual sport that they are participating in and are actually the best in their field. Once again to their credit Channel 4 are working to combat this, but as already mentioned there is still a long way to go.

As mentioned previously Channel 4 are attempting to make disability more normal, Hollyoaks for example has had a number of actors who are truly disabled and they have not been scared to be a little controversial at times firstly with a disabled mum-to-be and more recently a disabled headteacher. Although this has shown positive models of disability it may not have always shown a true example of what it is like for disabled people. I myself have learnt it is not as easy as it is sometimes made out to be, to be involved in normal life, in particularly that of getting a job. I don't want the roles played to be pitiful but a truer picture of what it means to be disabled would help those who are disabled and are actually struggling with the hand they have been dealt in the society that they live in.

Disabled people living normal lives, with normal struggles are not represented in the media coverage and when they are it is done in such a way that we are pitied and misunderstood. Why should I have to do anything amazing to be listened to? I should have the same rights as the next person. An example of this inequality was that of the Hardest Hit March and the Rally Against Debt. Around 8000 disabled people joined the Hardest Hit March in London (it would have been more if disabled people weren't scared their benefits would be taken away if they went), whereas a measly 300 people joined the Rally Against Debt. Unfortunately the number of people who supported these two protests was not representative to the amount of media coverage that was given to this issue. Although the Rally Against Debt received little coverage it still received some. The Hardest Hit March received very little in comparison and if there had only been a few hundred people there would have been no coverage for this big issue.

Media coverage is regularly biased and although there was some coverage of the March, the coverage it received was limited and bias. On the day of the Hardest Hit March The Minister for Disabled People, Maria Miller MP, was interviewed on the BBC and she went on to talk about the 'changes' to benefits for disabled people to decrease the supposed abuse of the system. She spoke about drug addicts and alcoholic scroungers as though they were the main people to claim these benefits, this would be fair enough if it happened to be true. The sad fact, is that this could not be further from the truth and has not given a fair insight into people living with disabilities. They face financial hardships due to it being more expensive for them to live because of increased fuel bills disabled people endure and the need for specialist equipment. Disability benefits, especially DLA are hard to receive as it is and the number of abusers is so minimal that it can hardly be said that these benefits are widely abused. To make the news report that I am referring to less bias there should have been a disabled person discussing why they were protesting and what these changes mean to them and many other disabled people, but as usual disabled people weren't given a voice.

Unfortunately, this type of coverage is shown a lot and does not help disabled people to be part of society. In fact it just adds to the false opinion that all disabled people are scroungers or they need to be pitied. It has led to an increase in hate crime and generally disabled people feeling less of society than they ever have. To make disability normal and give disabled people the chance to be heard the media needs to help to make it possible.

The media need to be part of the solution not part of the problem. While disabled people are seen as the able bodied person's poor relation that is exactly what we will be. Its time for a change in attitudes but we can't do it alone.

what is the cost of being disabled?

2011-05-14T22:57:00.000+01:00

I am writing this when there is much uncertainty in the world for disabled people. The government is making it there mission to hit disabled people, with unnecessary cuts and attacks on benefits for disabled people that, contrary to the story the media feeds the general public, is not abused. Only this week, approximately 8000 people joined the Hardest Hit March to protest against the devastating attack on disabled people. Disabled people as a whole have always been some of the poorest people and this is only set to get worse.

For many, everyday is a fight, made worse by the fact they cant afford to live. To live with a disability means expense that the average person cant even contemplate. I have always tried to live as 'normal' and 'full' life as possible, but unfortunately this has always come at an extra cost, financially, emotionally and physically. I will focus on financially for now as this is a very hot issue that all disabled people can relate to.

From a very young age if I wanted to live a good life than this was going to come at a cost. To make my life easier I have always required specialist equipment, that unfortunately at times I have been expected to find the cost, for example to get a wheelchair that I feel meets my needs I have always had to top up with my own money to get the chair that meets my true needs. When I was a child my mum had her own problems with her back, I was assessed for a new wheelchair and my mum was told that her needs weren't taken into account even though she was the person who always had to get my wheelchair in and out of the car. This led to my mum having more problems, It was decided that a wheelchair would be purchased for me privately so that it could both meet my needs and those of my mum. This wheelchair I kept till I was driving, where I learnt that even this wheelchair although much lighter than what I had previously been used to was still almost impossible to get it in and out of the car on my own. So I went through the whole process of applying for funding again, this time I went for a wheelchair that they offered me, simply because it seemed to be marginally better than the one I was using. This was the last time I made this decision and ever since I have topped the money up, to get what I need to be able to live, as what is deemed as suitable sadly falls very short. It is worth noting at this point that my current wheelchair cost around £3,000 and the NHS only gave me £1,800, I was fortunate to get some funding from "access to work" which helped bridge the gap, the future of "Access to work" is uncertain making it more difficult receive funds for what is needed. My wheelchair has to last me 6 years and I have to meet all the costs of maintenance. A pair of trainers might last 6 months if you are lucky at a cost of £100 if your splashing out. If you damage your leg it heals and the NHS help you fix it, if my chair gets damaged I have to pay. If someone can explain how that is fair I would like to hear it.

Other extra costs I experienced growing up included having to get taxis everywhere rather than using a bike or bus like many of my friends were able. When I was growing up the majority of buses were inaccessible and although this has improved, there are many occasions when this is still sadly the case and so it is always made much harder for myself as a disabled person to catch a bus. In fact there was a time recently when I started to get the bus into town to save me driving. Only to find that I was unable to get on the bus, not just because it was inaccessible but because there was a mother with a buggy who wouldn't collapse it to allow me on. This is okay on a glorious sunny day, but on days when it is cold and wet, there is no fun in having to wait much longer for a bus than my able bodied counterparts.

A subject often overlooked for disabled people is that of sport; as a child I was lucky with my school they regularly encouraged me to get involved, even helping me to purchase a sports chair (albeit quite basic). Unfortunately that was not and has never been my experience outside of school. I have always been keen to be involved in sport, unfortunately I learnt at an early age this was nigh on impossible with regards to disability sport. Not only was I sent round the houses when wanting information I soon learnt that to have the same opportunities as my able bodied peers it was going to be very expensive for me. For example if someone wants to take up running, all they need to get is a pair of running shoes and off they go. For a disabled person to have the same opportunities they need a specialist sports racing wheelchair. This is the same for many sports for disabled people. Recently I started learning how to play wheelchair tennis and I am lucky to have a sports wheelchair which I got some 15 years previously which is amazingly still in reasonable nick. As you can imagine technology has come on a great deal since I got this wheelchair and so if this is something that I want to get good at I will have to get a better wheelchair which could cost me anything in the region of £1500. For my able-bodied counterparts you guessed, all they need is there tennis racket, tennis ball and some trainers cost £100. It is worth noting that DLA is not designed for this that is only for care and mobility (I'm clearly not allowed hobbies). So, is it really fair that it costs me more to live, through no fault of my own, yet the state makes it harder for me to live by taking the smallest amount of money away from me, that I need for my extra personal needs.

Ok so you're thinking, why do you need to get involved in sport like this and you now have a car so you don't need to worry about the inconvenience of buses? That is not the only cost. Due to my disability I am very grateful to be entitled to a motability car because if I wasn't I would never be able to afford to drive once insurance, tax and I mustn't forget the most important aspect for me and that is the gravely expensive adaptations that I require and have no choice about having if I want to drive and still have some independence that is on top of the actual cost of the car. My husband recently brought a car, his decision was simple, small, cheap, low mileage. For me it would need to be automatic, big enough for me to put my chair in, ensuring the gap between the door and chair isn't too big ... I could go on. Motability is a massive lifeline for me which by 2013 could be taken away. For those who don't know Motability is a charity and in exchange for my car I give up the higher level mobility component of my DLA.

It is also a very sad fact that when a disabled person would like or even is able to work, this is rarely made possible due to the negative view about disabled people, with people focusing on what can't be done rather than what can be done. Disabled people often require a much more understanding, forgiving environment to be able to work effectively which is very unlikely in the world that we live in. A recent article in the guardian speaks of this problem and that of the greater problem of the way disabled people are in society. The article is here: http://www.guardian.co.uk/society/2011/may/14/disabled-face-increasing-hostility-strangers, it shows that with the Government constantly labelling us as work-shy, drug addicts who drink too much we pay the price from strangers who know nothing about us. One of the worst is in fact Maria Miller MP who is the Minister for Disabled People! Indeed even the Guardian, one of the better newspapers, gets it's facts wrong. It mentions that DLA is people who are physically unable to work, this is incorrect. As already mentioned it is to help with care and getting around., it is the least abused benefit.

So, as you can read from this blog there are numerous additional costs involved with being disabled and in particular a wheelchair user. If only a member of the Government would sit up and take note. It is ironic that on March 26th 500,000 people marched through London, on May 11th around 8,000 disabled people marched though London both in protest at Government cuts. Are we really all wrong?

Experiences of Dublin in a wheelchair

2011-05-02T20:01:00.000+01:00

I have just been on a long weekend break to Dublin with my husband. We set off at a stupid time in the morning (left the flat at 3.15am). We decided not to book special assistance, because even when we do it does not always go smoothly. When we arrived at Bedford Station we were pleasantly surprised. We started to head to the platform that we needed, and rather than having to ask for assistance like we usually have to I was asked whether assistance was needed. This is how it always should be but, sadly, rarely it is. When the staff member helped me on the train, he said he would call through to the Luton Airport Parkway. Not surprisingly there was no one to meet us at the other end and so my husband helped me off the train (he is used to this). We then had a painless journey using the airport bus which was accessible and the bus driver was very cheerful.

We completed Online Check-in as we did not have any luggage that needed to go into the hold, this meant that our first point of call when we arrived at the airport was making myself known to the special assistance desk. The staff member we dealt with was friendly enough, took details and explained that when we have got through to the departures that we needed to go to the other special assistance desk. When we arrived here, we found that the area was cordoned off, we could move this out the way to get through, but seemed a bit strange that the area for people who require special assistance would be made more difficult to get to by having obstacles put in the way. The lady at the desk, seemed a little put out that we hadn't been to the Check-In desk, so we did not have a traditional boarding pass, we just had the print out (surely that is the whole point of Online Check-In?)

Anyway she took our information and explained when we needed to be at the gate by 5.45am. We then went off to get a drink and croissant. This unfortunately got rudely interrupted by a fire alarm going off. No one seemed panicked, so we started to head towards are closest fire exit calmly. At this point we were faced with not being allowed to use our closest fire exit. This meant that people began to get a bit more agitated but the only thing we could do was follow the crowd. We then found a group of disabled people and special assistance staff and so followed their lead. This whole experience seemed very disorganised and worrying, thankfully this was only a false alarm, if this had been more serious, I worry we would have not got out. Staff members we spoke to told us they agreed with our feelings that this was badly organised and is never dealt with appropriately.

This blew over and I then headed towards the gate in preparation for my flight. I was then met with a lift that had the words 'out of order' on them. This was the lift as far as we were concerned that I needed to get in because it was labelled with the gate number I wanted. As this was the case my husband went off to speak to someone about this. There are two points I will raise here firstly, thankfully I was with someone who could do this for me otherwise this would have been made even more difficult for me, secondly the person that my husband spoke to did not seem very clued up and so said things like 'so she cant walk down steps then' um... no full time users usually have this problem! Anyway we ascertained that I could use another lift even though it was labelled with different gate numbers to what I wanted. So I made my way to another lift which was in the opposite corner, before getting to it I needed to navigate my way through tables and chairs which were crowded together which made reaching the lift more difficult. Once at the gate, special assistance were friendly and spoke to me and got me on the plane without any hassle. Although the flight attendants referred to me as a 'wheelchair passenger', which is quite rude and insulting. I thought I was a person? It just so happens I sit in a wheelchair to help me get around as my legs don't work.

I survived my flight, I don't particularly like flying due the effect air pressure has on my head due to my hydrocephalus. Once at Dublin airport we were met by some lovely special assistance men (on time for once!) who helped me off and we were on our way. We went to get the bus, which was fully accessible and being driven by a very friendly bus driver. Once at the bus station we went on foot to the Hostel we were staying in. It took a little finding initially because we went to the sister hostel first. Once we found it, I was pleased with its accessibility, level entrance etc. We asked if we could check in but unfortunately this was not possible until 3pm. We were able to leave our bags there and so we did this. Before heading off I attempted to ask whether there was an accessible toilet, this was unfortunately made difficult by the fact that the counter was very high and he was now sitting down again, but I did manage to get his attention and he was very helpful in the end and showed me where the toilet was. So we left our bags and went out to explore.

Our first stop was to get food and a cuppa, being up at 2.45 was taking its toll especially as we were unable to check in till 3 pm so it was feeling like it was going to be a long day. After finding a cafe for some breakfast we headed straight to where the tickets could be purchased for the hop-on hop-off bus tour. My husband went in to purchase the tickets while I waited outside. We then headed towards the bus stop, to be greeted with a bus which happened to be inaccessible. We spoke with the bus driver who was very friendly and helpful. He explained that 1 in 3 buses should be accessible and that he would ring through to make sure this was true. We were a little surprised to be faced with an inaccessible bus because up to this point transport had been good for accessibility and so hadn't thought they might not be. Why should I think that in the 21st century accessibility is not the norm? The next bus did arrive about 10 minutes later and it was accessible and so we were able to go on our way. All the bus drivers we met were very friendly and always made sure that they stopped people getting on and off while I was getting on. They also always spoke to me rather than my husband. That may not seem like much but when I have regularly been faced with the complete opposite it makes a refreshing change.

On our first day we went to a number of places along the Hop-on, Hop-off route which were good. We also found that although not all buses were accessible we timed it right and were always able to get on a bus without having to wait for long periods. Unfortunately this was not true on every day and the lack of accessible buses became evident on the second day, where we found ourselves waiting 45 minutes for an accessible bus. fellow tourists had got on 3 buses prior to the one which were accessible. This was not helped by the fact it was also raining slightly on this day and that this just added to my feeling of inequality in society. As I said we finally got an accessible bus turn up and we were allowed to be on our way. We stopped at Trinity College and the National Gallery on the first day. Trinity college was reasonably accessible and we we looked round, at a leisurely pace.There was library/museum which was very informative where we were able to see the Book Of Kells. Much of this museum involved me having to go up and down in a lift operated by a member of staff, but this was not a problem as they were more than happy to help. Especially one lovely man who would make conversation and provided me information about the place which was not readily available. This just added to my positive experience of this attraction. The main problem that I experienced was that of other tourists who seemed oblivious to my existence, walking in my way or, in the case of one person, placing their bum in my face because I was where they wanted to be. So inconsiderate of me, of course I don't have the right to learn and experience culture in the same way the rest of society does.

We then went around the national gallery, which was fully accessible and very interesting. There was no problems with this venue, apart from the obvious ones, which involved other tourists but sometimes you have to learn to accept it and so can become blind to peoples attitudes.

We then finally headed back to the hostel to check-in which was very welcomed because although up to this point we had a good day we were both exceptionally tired and ready for a rest. On route to the hostel, the front wheels of my chair got caught on the cobbles and I fell out of my wheelchair. When this happened people came to help straight away, I was not hurt so I was able to brush myself off and carry on into the hostel. Unfortunately this has happened too many times to count!

The room as you can imagine for a hostel was very basic, but they had tried to make it as accessible for a disabled person and for me personally it was more than adequate with a wheel in shower and a few grab handles. I was very tired and hungry which was beginning to affect me physically, I was aching as well as began to gain a migraine style headache. So very ready to have a rest and slept for an hour. When I woke up, not sure I felt that much more awake but was thankful that the migraine that was threatening had dispersed. We went down for dinner (Irish stew for 5 Euro was on offer) in a canteen area (for those of you who don't know hostels, they are more friendly and it is not unusual to sit on a table with complete strangers). We then went out for the evening. Through our previous exploring we had found a pub that we liked the look of and so decided to give this a go. We went in and found ourselves a table, when my husband went up to the bar he was asked if I was with him, when he said yes the barman explained that although they did not have an accessible toilet in the bar, there was one in the restaurant next door which I could use. We later found out that they both the same business, and that due to the age of the pub building it hadn't been possible to put a disabled toilet in. To me it didn't matter that there wasn't one in the pub, because I realise that sometimes it is not possible due to the age of a building for example. It was good that they had put a strategy in to place to cope with this difficulty and it was never an issue for me to go out one door and in the next (there are some places I have been and never had this option). The staff were all very friendly in this pub, so much so that we felt welcomed to want to come back again on more than one occasion. One staff member in particular seemed to go above and beyond to ensure we had a good visit. Having said that it was not done in a patronising, singling me out as different kind of way. It was just a genuine, helpful lad who wanted to ensure of customers got the most out of their visit. This was one of those occasions where , I can thankfully say equality was in motion. As I said we went back on more than one occasion, always getting a high level of service, so much so that when we first got in to the pub on one occasion a table was being found for us straight away. We also went into the restaurant next door and again received a high level of service that any owner could be proud of.

Each morning we had breakfast at the hostel, which was a free for all, making your own toast and getting your own cereal etc. This was quite nice and was a different experience to what I was used to as I was not singled out and was the same as everyone else (equal!). One morning my husband left me to finish breakfast and when I was done a staff member helped me to put my dishes away without it being a problem and feeling a burden.

On our second day, I unfortunately experienced more inequalities than the first which at times became frustrating and only added to my feeling of not being equal. It started when as I have already said we had to wait for 45 minutes for an accessible but, which put a dampener on things (quite literally due to rain). The first place we visited on this day was, St Patrick's Cathedral. For a very old building they had put thought into accessibility. There were steps going down into the Cathedral but they had installed a wheel on stair lift. One nice elderly gentleman told us it might not be working but that their was an alternative route in if we needed it. It's a pleasant surprise for their to be 2 accessible routes into a building when so often their isn't even one!

We were shocked at how much it cost to get in (11 Euro for both of us), but were willing to pay it because we really wanted to look around. When we got in I was a bit saddened to find a souvenir shop which looked like it had literally been plonked in the middle. This seemed to change the atmosphere not for the better, and perhaps this down to the capitalist society we live in. We continued to take photos and move around the Cathedral until we got to a smaller side chapel, which was behind a cordon. At this point a lovely old lady asked would we like to look around, we were quite honoured at the prospect as not everyone was allowed. She spent quite a lot of time talking about the history of the cathedral and seemed genuinely passionate about what she was saying to us, which was lovely. What stuck out was that the lady spoke to me and not just my husband, I was treated equally. Perhaps we did get let through because I am a wheelchair user but with so many barriers put in my way it's nice to have a few perks!

After going to see the Cathedral we went to something completely different, the Guinness Store House. This is basically a museum attached to a factory and so we were unable to see any of the working factory. This is an experience that people always say you must do, but to be honest it is completely over commercialised. At this venue I also found that there was quite a lot of discrimination at work. Firstly the flat accessible entrance meant going over cobbles, which for anyone who has had experiences of a wheelchair or pushchair (for the mothers out there) is not the easiest of surfaces to have to cope with. The next problem I experienced was the ability to access all areas, as I am sure you will appreciate due to being a full time wheelchair user I can never use stairs so rely fully on the lift to get to different levels. For the first few levels there was a different lift to the rest of the building, which to be honest I was quite grateful for because it never meant I had to wait for long on the first few levels. The problem with the first few levels was that I had to go against the crowd of people to get back to the lift. I have spoke about feeling invisible in previous posts and this is exactly how I felt at this time. People just didn't see me and when they did they looked at me with distaste as though I shouldn't have been there. I wonder whether there could be a way to add more lifts to prevent this problem (I am not an architect/builder so that may just be ideology). The further up I went meant that I had to use the lift which was used by everyone (whether they were able to walk up stairs or not), this added insult to injury when people would use the lift instead of the escalator which was actually right next to the lift and they had to walk past the escalator to get to the lift. This increased my waiting times by quite a lot, because so many people chose to use the lift rather than use the legs they were born with that work. I have always known not to judge people, because I do appreciate that on first look it is not always possible to tell, but the level of people who were choosing to get the lift was far greater than the number who needed the lift I am sure. In one experience there was a quite able family who were waiting for the lift in front of me, and when the lift came there was not the room for me and them. So what did they do? Do you think they let me in first as that is the decent thing to do? If you answered yes you are sadly mistaken. I had to wait for the lift again which took a very long time to come. I am not saying the only people who should use the lift are wheelchair users, but there is a great abuse of this, due to the lazy culture of using the lift rather than expending some energy climbing stairs. Anyway we survived the Guinness Store House and got our free pint from a bar that reminded me of a loud, busy and soulless pub and then went on to our final attractions for that day which provided me with a much more pleasing experience.

The next stop was the old Jameson Distillery. It has a much more relaxing feel and I felt a much more valued customer throughout my whole experience. There were ramps and lifts to all areas which were not abused by the customers and so was able to move freely at the speed the tour guide intended. Everywhere was accessible and at the end of our visit when I mentioned that there seemed to be a rather large puddle on the floor in the disabled toilet the manager was very apologetic and was on the case straight away. He was also keen to get my feedback about accessibility and my opinion did seem to count.

On the last day, it was a more relaxed day with little to write about, we didn't use the bus on this day and so just made our own way to places. We attempted to go on a tour around the medieval area, but we would have had to wait for a couple of hours and we were unsure what we would have done for all this time, so instead we did a bit more wandering. We went to the Chester Beaty Library where there were exhibitions on and we stopped for refreshments. All areas needed were accessible and no major problems were experienced going around this venue.

We then went for a general wander around Temple Bar (lots of cobbles!) before going for a meal in the restaurant next door to the pub we had been going and went for a swift half before going to the bus station. We got a bus to the airport which went smoothly. When we got to the airport we found the special assistance desk and they said that someone will be at the gate to meet me - note in Dublin there was only 1 special assistance desk! So we went through the motions and waited. Time was getting on and there seemed to be no sign of special assistance, which began to worry me, they finally turned up very last minute and I managed to catch the plane I want. Due to the rushed nature of this, I was very worried that my wheelchair would not be there at the end not least as when we were boarded they had closed the hatch to the hold!
However thankfully it was and I could make my way home. When I arrived at the train station someone asked me straight away if I needed assistance, which as with the journey out was amazing and quite rare for First Capital Connect. We accepted the help and he said he would ring through to Bedford. We did not expect anyone to be there once we got to Bedford but we were pleasantly surprised and had someone to meet us with a ramp a friendly chap called Jason who I have met before. It's nice to be met with a smile at 12:30am!

So this is my experiences of Dublin in a wheelchair. There were a few issues, but nothing that was specific to the location. I would definitely think about going to Ireland again as most people I met there were very friendly and helpful. The people that weren't were the tourists who were too wrapped in their own lives to care about anyone else.

Equality for All?

2011-04-25T21:16:00.000+01:00

Equality is a very controversial subject for many disabled people, because there is a general feeling within the disabled community that they are not treated equally. Equality will only stop being a problem when people stop having an uneducated, inaccurate opinion on what it means for people to be treated equally as this is how disabled people want to be treated. We want the same opportunities as our able bodied peers. For this to happen society needs to be educated to allow an understanding of what it means to live with a disability, as the hashtag on twitter goes, '#disabilitynormal'. For disability to become normalised we, as disabled people, need to be treated in exactly the same way as our able bodied peers, as mentioned above we need the same opportunities to live a 'normal life' without man made restrains due to accessibility needs and societies ability to hide behind the phrase 'reasonable adjustment'.

The biggest limitation of being a disabled person is not the fact that I cant walk, yeah that is a pain but at least I have a wheelchair that provides me reasonable independence similar to that of someone who is able to walk. Opinions of the wider society and restraints that society puts on to me and many other disabled people. As a disabled person I always have to think about where I am going in more detail than my peers, which has been true all of my life. If I want to go out with my friends, I have to think about whether there is access for me and then if there is, what about a toilet I can use. I can tell you, its not much fun going somewhere and knowing that I cant have much to drink because there is not a toilet that I can access.

I come up against physical access restraints on a regular basis, some of which shouldn't have been a problem as there are ways around certain problems that I face (if a small amount of thought is put into it). Recently I wanted to go on TUC March 26th, I intended to attend with my fellow union comrades. This should have been simple because I provided plenty of warning that I would like to do this and I know it is possible to get coaches which are wheelchair accessible. I was told that someone would look into it and that it shouldn't be a problem hiring a wheelchair accessible coach. The weeks went on and although I kept trying to find out what was happening, still I didn't hear anything. I had to formally complain before anyone spoke to me about this issue. By this point there was only a couple of days left before the march and so had to sort out transport quickly. I was hurt and disgusted by what had happened and felt that it didn't have to happen in this way. For all my fellow comrades the journey was very straightforward and didn't have to pay a penny towards their transport, unlike myself. Then there is the problem of a very inaccessible transport system in London. Some of the tube stations we had to go through, are classed as wheelchair accessible but there is no way that I would have coped on my own on this journey. Again these are all things that able bodied people don't have to think about and they are all aspects of why disabled people feel trapped and unable to live full lives, just adding to the feeling of inequality within society. I understand that there are times when it can't be helped, some buildings and transport links are so old that the changes that are needed are just not plausible. Having said that there are times as I have already mentioned when organisations and individuals hide behind the phrase 'reasonable adjustment' because it is seen as too much like hard work and extra expense that why should they do it for a so called minority. The fact is there are become more disabled people who require accessibility to be addressed. If some of the physical accessibility constraints were addressed disabled people could become more independent making it more possible for them to work and put back into society. Disabled people do not want to claim of the state, they just don't have a choice. Disabled people are seen by the wider society as a drain on resources. We are only a drain because society has made it so for so many disabled people. Disabled people just want to be given the opportunity to show that they 'can do' with the right support.

So I have spoke about the physical constraints of living in this society with a disability, but the lack of equality goes much deeper for many disabled people. Peoples attitude and behaviour towards disabled people can be the most disabling of all. All my life I have had people treat me discriminatory, it is something that I have learnt to brush off, and put a mask on how I am feeling. But how people have treated me has affected me and how I feel about myself and my position in society. There are times when I find it hard not to react to something someone has said, but I am always the bigger person. I find myself making excuses for people, but why should I? The things that people say have come from somewhere whether they are a true view or not. Imagine that a man and a woman are sat together in a pub, you don't know either person, you would quite like to know the woman's name so you ask the man. Now, that is clearly a stupid thing to do but this regularly happens to me people talk to someone with me instead of talking to me directly. There is also issues around the language people use. As a scenario you are in a restaurant and your waiter comes up to you and asks if you want a bib (you would expect napkin). Both these examples are stupid things to say to someone but I face things like that on a regular basis. Recently, at a conference, I was in a lift and someone asked if my "pushchair" counted as a person in terms of weight. I don't own a pushchair, I use a wheelchair! Straight afterwards when coming out of the lift people around me were asked if I needed any help, I was not asked and I got myself into the lift without any problems at all! These are just 2 recent examples, I could list endless examples where people have said things that they don't understand as being insensitive and actually very rude.

Misconceptions need to be challenged, people need to be educated and a negative disability picture needs not exist for there to be equality for all. Recently I read a blog by a fellow twitter activist where she explained how she had got a t shirt printed, which sent a message out about disability and challenged negative views of society. Every disabled person needs to challenge society beliefs to ensure that disability becomes normal and every is treated equally. So I suggest that we all follow in Crimson's steps and challenge negative behaviour and opinions. To read crimson crip's blog follow the link below -

http://www.crimsoncrip.com/
You can also follow her on Twitter @crimsoncrip and me @sazzyactivist

why is there still a stigma attached to depression?

2011-03-14T21:22:00.000Z

I started writing today with a great need to write, but not really knowing what I was going to write about or where this blog was heading. All I know is writing my blog helps me to verbalise some of my thoughts rather than have them stuck inside my head whizzing around at a hundred miles an hour. Sometimes I do not see this though because as we all do I get caught up in life and feel like I just don't have time for it. This makes things worse for me as I then feel guilty about not writing anything and leaving people wondering when my next blog post is going to be.

Guilt is a very powerful emotion and something I suffer from a great deal. The guilt I feel about things makes me feel worse and puts extra pressure on me that I do not need. I also do not cope with stress well and so guilt and stress can become a lethal concoction. I have actually had quite a stressful day today and was glad when I got home so that I could rant and rave! Learning which situations you find stressful and recognising the warning signs is the first step to being able to cope (for me anyway). I have found the same is true for depression. At present I am on anti depressants, although it took me many years to accept that I was suffering and that I needed to change things I finally made the step to recovery.

Unfortunately there is still a stigma towards mental health problems which often makes it hard for those suffering to admit that there is a problem and that something needs to change. About seven months ago now I took my first step to what I describe as my recovery. I went to the doctor because I knew that I didn't want to feel the way I did any more. The worst thing for me was the YoYo mood, not bipolar levels but my mood would vary massively from day to day. My lows were becoming lower and more frequent and although my husband was amazing through this time, it was a strain on him and our relationship as well. At the point of me making that first step we were not married and I suppose that was one of the biggest reasons why I knew I had to change something because I did not want to go into marriage with so many difficulties. Marriage is supposed to be a joyous time and if I was suffering as much as I was at this point then it wouldn't have been what every woman dreams of.

So I head off to my doctor to speak to her, she was very supportive and I suppose once I had the first appointment there was a relief about taking that first step. She went through the motions and referred me to counselling as well as prescribed me antidepressants. For a short period of time after this first appointment I felt like I lived at the doctors (that is good I suppose as I was at least being treated properly). It took me a little while to get the right medication, at the right level. Some of the times before this were quite scary because it actually magnified some of my feeling and experiences. I am naturally quite an anxious person, but the medication initially made this worse. I started to wonder whether I had made the right decision, but thankfully since the medication has been sorted it has gradually started to make me feel better.

Counselling took a while to start and so this did not occur until after I got married. Thankfully the medication was beginning to work by the time the wedding came around and I was feeling a little more settled and able to cope, most importantly able to enjoy our special day. The wedding day was all that I could have wished for and the honeymoon was amazing. When I came back from this I struggled a little as it felt that I was coming back to earth with a bang. I have learnt to keep busy, but not too busy that I let things get on top of me. I do find it difficult to say no and so sometimes will take on more than I should do. Learning to pace myself will only take time, but I am trying because I know that this is one of the main ways that I can keep a healthy mind.

The counselling finally started and I attended all the 12 sessions that I was offered. These sessions gave me the opportunity to look at areas of my life in a way that I perhaps hadn't done previously. Doing this has helped me to approach experiences in my life in a way that I may not of done before. As I mentioned previously I do not deal with stress well and it is through counselling and giving myself time to think about some of my experiences I have come to realise this and find a better way to cope rather than going in on myself and letting it eat me up.

I have also found my own counsel in my blog and some of the activities I have now got myself involved in. I see myself in a more positive light and recognise that I have something to offer the world. I write my blog for myself, but I do hope that what I write does help people who may be going through similiar themselves. Depression is not something to be ashamed of, it can happen to anyone. If you are feeling this way it is not a failure to ask for help (this is something that I have only learnt recently). People who have not suffered from a mental illness cannot fully appreciate what it is like but, if you admit you need help people are there to listen, be it a friend, relative or doctor. Please don't suffer in silence.

What is it like to live with Disability, Pain and the Expectation of employment in the mainstream world?

2011-03-03T10:59:00.000Z

I have a lot of experience of pain which is as a direct result of my disability and regularly feel that people just don't understand, so feel I am qualified to share my opinion on this. I have been a wheelchair user all my life and my body to put it politely has taken a battering and is a mess. This has meant that as I get older I have suffered with more pain, especially with regards to my back going into spasm. I perhaps haven't looked after my body but have I had a choice? Not really, if I chose not to do something due to the risk of hurting myself I wouldn't do anything. This is not a life worth living! So I make the only choice possible, which is to put myself at risk on a daily basis to live as normal as possible.

Expectations of other people puts pressure on me to do things that you know could potentially harm you. Since I have been driving I have had to get my wheelchair in my car on my own and as I can't stand at all it means I have to drag my wheelchair over me to place it in the passenger side, this video on you-tube gives you a slight insight into the difficulties of getting in and out of the car just to go out when you are a disabled person http://www.youtube.com/watch?v=kuFiAMLZmCs&feature=related. People have always helped me with my wheelchair if they are around, but that cannot always be guaranteed if I want to be an independent active wheelchair user. The process of getting in and out of my car also takes time, so I always have to give myself plenty of time to get wherever I need to go, rather than just 'jump in my car and go' as so many other able bodied people do without thinking about it. I think this is one of the hardest things about having a disability and that is seeing other people do things so much easier and they take it for granted.

These are all things that able bodied people don't have to think about and so this adds to the pressure to do things that you know potentially could hurt you more, just to be able to fit into society. Recently I looked into the option of a rooftop hoist, which hoists my wheelchair to reduce the strain that getting my wheelchair in and out of the car provides. This option sounds like a good idea I hear you say, so this is why I am going to explain why they aren't as great as they sound. Firstly they would slow the process of getting in the car and going out even more, that is if I decided to get it fitted in the first place. Before having it fitted I would have to make some other choices. The wheelchair that I have at present would not be suitable for the hoist and so I would need to change it to a folding wheelchair. For an active wheelchair user this is not at all practical as they are much harder to push because power is lost due to the movement of the frame. The piece of equipment is also very expensive, because it is specialised and the companies that sell it know some disabled people have no choice about the purchase. I would get some financial assistance with this but would still be expected to find quite a bit of the money, which on part-time low pay is not the easiest option. So as you can imagine I chose to stay with a lightweight wheelchair. I have managed to get a really lightweight wheelchair which has helped, but I still had to find some of the money.

I received some support from Access to Work and Wheelchair Services. But that is another issue altogether, both sets of funding are at risk of government cuts set by the current Tory led government. If these cuts are put in place, this will just marginalise disabled people further in society. Making it even harder to be part of a society that they have a right to be part of. Just because my legs don't work why should I have a lower standing in society than someone who is able bodied.

I mentioned expectations of employment in the title of the blog, what I mean by this is partially what I have talked about already but also, my employer has always known me to be able to get to work on my own, in my car and so it is now expected that this is possible and don't see why it isn't sometimes. But as I said earlier, my back has took a battering and so this now means that I get more back pain which does stop me from doing some things because it is just too painful. For a time, before I got my newest wheelchair, people at work were very helpful (although not before I was in tears about it) and would help me in and out of the car to save my back. The situation shouldn't have necessarily got to this point as DDA states 'reasonable adjustment' and if helping me means I can go to work more because I am in less pain then surely this is 'reasonable adjustment?'.

But now because I have a lighter wheelchair that is meant to save my back from as much pain, I receive less help again. I don't expect special treatment and so I have allowed it to go back to this, but there is the worry that even though I have a lighter wheelchair that I may still have problems with my back as was shown yesterday when my back went into spasm, although it wasn't one of the worst spasms I have had it still caused me problems throughout the day but I still went to work because that's what was expected of me. There have been times when I have decided I can't go to work because of the pain, but I always feel guilty about this, because I feel I am letting people down. I also feel that the pain I get is not understood which is understandable I suppose if they haven't experienced this kind of pain.

Sometimes, the expectations of work come before "reasonable adjustments" and so make it harder for people to go to work and be part of society. The many cuts that the government are planning to make including DLA and Access to Work to name a few are going to make it harder for people to go out. The harder it is the less likely it is. Will we become the hidden, forgotten society?

Disability living allowance cuts could confine disabled to homes, say charities. Read this recent report in the guardian that shows the extent of damage these cuts will provide-

http://www.guardian.co.uk/society/2011/jan/12/disability-living-allowance-cuts-charities?INTCMP=ILCNETTXT3487

Is it right how people perceive disabled people?

2011-03-01T10:15:00.000Z

I would like to discuss experiences through my life when someone has said or done something that was inappropriate to disabled people. I would first like to thank those who commented on my previous post, especially as some of these comments about how disabled people are made to feel were what gave me the idea for this post.

How many of you have come across someone who says something that irritates you? How many of you are disabled and it has been an able bodied person who has said something that irritates you? I am guessing many of you have had one or two of these experiences. It isn't a nice experience in either situation but there is a bigger problem with what some able bodied people say to disabled people because this shows a small glimpse of what they believe to be true about disability. The media doesn't help this perception, because their opinion is listened to whether it is right or wrong.

I specify adults as my subject, because in theory they should know better. Children will often ask inquisitive questions about why I am in a wheelchair and will really mean what they say when they ask "Why don't your legs work properly?" rather than "what happened to you?" followed by sympathetic looks of I'm sorry to hear that. I don't want your sympathy I just want to be liked and respected like everyone else I come into contact as I am part of society and as such should be treated in this way.

Other irritating things people have said to me on more than one occasion, is things like "At least you don't have to look for a chair to sit in" or when drinking and said to me just this weekend "At least you wont fall over,".
I always feel like saying "What do you think will happen when I get out of my chair?" or "Do I stay in my chair all day and night? Do you really think I want to stay in my wheelchair", I would like to get up and stand but have accepted that this will not happen. I don't mind so much that it wont happen, just don't need someone bringing attention to it at every opportunity. I am sure able bodied people make these comments because they are unfamiliar with the situation they have found themselves in, but if you aren't sure how to treat someone just treat them how you would like to be treated yourself. If everyone does this then they wont go far wrong.

Oh and apparently I am too young and beautiful to be disabled, which was said to me as someone jumped in the disabled space in front of me because they thought I didn't need the space, is it only old people who need blue badges? If so how come it is estimated that there are 400 million disabled people in the developing world? Contrary to popular belief in the media disabled people don't chose to be disabled and there is not wide spread abuse of disability benefits.

The blue badge on the other hand, there is abuse and I do feel that something needs to be done to prevent this abuse happening. This will only help as long as those who generally require the use of a blue badge don't suffer as a result. There are many a time when I have needed to park somewhere and have ended up parking miles away from my location just so that I can get in and out of the car with enough space for my wheelchair, yet I see people running out of the car and into the building (so they need a blue badge then)! I wouldn't wish the struggle of disability on anyone but I wait to see how these people cope if they really did become very disabled and relied on the space being there. If I can't park in a space big enough I can't go to work, or go out and spend the money that I have earned at work so I am not able to put back into society.

If I am not able to do this I will be forced to claim benefits which I would rather not do, but I understand why so many disabled people feel that this is there only choice because it is not made easy for them to earn their own money, for the reasons already mentioned but also through the lack of understanding of disabled peoples abilities rather than their disabilities.

Disabled people find it harder to get work because of lack of understanding and the work that they get is often paid poorly and only a few hours. The other problem thanks to this government is that the easiest place for disabled people to find work is in the NHS and unfortunately if the government has their way there wont be such a health service for disabled people to be employed by. I do not work for the NHS directly but I work for a charity that is partially funded by the service and so if this money stopped so would my job, unfortunately I am not convinced I would find a job that easily and it is only likely to get worse, being part of a marginalised society is not an encouraging prospect for me and so many other disabled people.

The above mentioned will only change with time, but this government is making it hard for positive change to happen. Disabled people need to show themselves in a positive light and able bodied people need to be willing to listen. Last year the first Disability History Month was held which has been put in place to raise awareness and show disability in a positive light. I will be part of the planning this year, and so hopefully this can go some way to changing attitudes in the future. Disabled people are part of society and will always be so let them be part of it. For more information on Disability History month follow this link http://www.ukdisabilityhistorymonth.com/

Are Disabled People invisible in a mainstream world?

2011-02-27T21:05:00.000Z

I was in my local pub when I started to think about my last blog post as a result of how some of the non-locals made me feel. On the most part I have become a well known face and am treated with respect that I feel I deserve. I am not treated any differently to anyone else in the pub, by all those that know me there. It is the people who don't know me who seem to have no respect for me or my feelings and have made me feel unwelcome or different at times and as my blog post title suggests I am made to feel invisible by some able bodied people. A regular occurrence that irritates me, is when people knock into me without a second thought. I hate it because it feels like the only reason they knock into me is because I am invisible to them. People go past me and will knock into me even though the 10 people before have managed fine to get past me without it being a problem. Some people are very apologetic, others barge past without a second glance as though they just knocked into an inanimate object.

For disabled people the biggest problem they face on a daily basis is the way that they are treated differently, often in an unfair way. Through the prejudice of society and the perceived view that 'normal' people have about disabled people, equality is an idea very much in the distance for those who live with a disability. There has been many a time over my lifetime that I have felt invisible to people around me when experiencing life in a mainstream world as a direct result of being a wheelchair user. It feels as though it is my fault that I am in the way of them getting somewhere. When I am stationary and people walk into me I still receive a look that suggests that I went into them.

I learnt very young that disabled people are treated different and rarely was it to the benefit of the disabled person themselves, an example of this was when I used to go into fast food restaurants and order food for myself and then they would tell my mum or whoever I was with how much the meal cost and expect them to pay looking upon me as incapable of such a straightforward task. The saddest aspect of this, being that it was often those who were younger who would treat me the worse (one would hope that the younger generation would now have more understanding as a result of better education of such issues). When I was younger I wouldn't always notice until it was pointed out to me. I suppose I assumed that this was normal behaviour so accepted it for that. As I have got older I now realise this is a popular form of inequality, disabled people are being discriminated against like this on a daily basis. I have learnt to express my dislike for the discriminatory behaviour being practised because as I have learnt the people portraying this behaviour do so because they know no better, assuming they are doing nothing wrong because they have not been educated to think anything different.

As mentioned in previous posts I have learnt to behave appropriately and be diplomatic in these situations because unfortunately lowering myself to their level doesn't teach them anything and in the long run doesn't make me feel any better. There are many circumstance where I have found I have experienced inequality whether it be through education, employment or social environments. I have learnt to educate people as best as I can and show them a positive side to disability and my abilities, whether I have ever changed people's perceived views, that remains to be seen. I can positively say that there are some people who I haven't been able to show them my abilities and so unfortunately have had to approach these situations with the attitude that you win some you lose some. Not every disabled person has the confidence or the strength to approach inequality in this way and there are times I become fed up with the fight for equality. Equality for all will not happen until disabled people are not seen any differently to fellow humans who are seen as not having a disability.

The following link helps to show that my opinion and experiences are unfortunately based on fact There are an estimated 400 million disabled people in the developing world and there is still a great inequality experienced within the disabled community-

http://www.400millionr.org/400millionRIntro.pdf

It's a sad fact that what this government is doing will only increase this inequality for disabled meaning many will face increased discrimination and a decreased quality of life.

How did a disabled person find her voice in a mainstream world?

2011-02-23T22:25:00.000Z

After my gap in writing I have decided to write about how I found my voice in a mainstream world. To do this I am going to write about what I have been up to. Right . . . so what has been going on that is more important? I hear you ask. Unfortunately this is a time of much uncertainty for many people, not least disabled people. Which has led myself and many other people to show their passion and want their voices to be heard. So this is what I have been trying to do. As part of this I have become more involved in union based activities, going to different conferences, meetings and generally asking many questions. I have also learnt some of the joys of social media and how they can help to put my point across and learn more about what interests me so I am better informed, these include twitter and blogging as I am doing now.

For many years I never shared my opinion no matter how small because I was scared of what people would think. My family have always had strong opinions which if I am honest I have not always agreed with, this has made it difficult to air my views in public. Some of this nervousness about having an opinion that I shared, is as a result of society and the need to fit in, I have also had to learn which battles are worth fighting and whether if I shared my views they would be listened to anyway.

In more recent years I have learnt that it is possible for me to have an opinion, even if it is different to other people. Having said that I am still careful in certain situations as I am sure you can imagine, its not always easy to change how you are with specific people and as mentioned above you have to choose the battles you fight.

I owe the new voice that I have found to my husband, who has shown me that it is important to have my own opinion and challenge what you believe to not be right as this is the only way that things will change. This is very true with regards to society, and the way they view disability.

Society is one of the biggest problems for disabled people, because it is often the opinions of others that stop disabled people from being part of society and able to experience all that others in the society I live in experience.

Opinions have changed and on the most part for the better, but there are still times when every disabled person will have to face prejudice and small minded views on what it means to live with a disability. I can recollect many occasion where young and old have treated me noticeably different to other people that they come into contact with just because that is the accepted norm with people they know. This is quite hard to deal with at times but I have learnt some acceptance of this where individuals are concerned because I realise that this is isn't how everyone sees disability and I try to educate people so they deal with disability the way people with disabilities want to be. Educating people isn't always easy, especially for the older generation, who have had grandparents and parents to guide them in their beliefs. I used to think it was something I said or done and couldn't see what other people saw because I only saw me, I didn't see someone in a wheelchair.

As I said previously, choosing the right battles is the most important aspect for me, I now see that the friends I have and the people that come into close contact with me see who I am, rather than the wheelchair that I sit in. Unfortunately I have had to accept that not everyone sees me and all they see are the problems that are caused by sitting in a wheelchair.

One such situation of people seeing the wheelchair and not me is employment, over the past 10 years I have had numerous volunteer roles and one employed part time. I am currently in the employed position and for the most part I enjoy the job that I do. It has given me great experience and has allowed me to grow in confidence, but it will never be a career and will never pay me what I feel that I am worth, considering the qualifications that I have gained over the years.

I have applied for other jobs, which I either haven't had an interview for or have been unsuccessful at interview. The interviewer of the job where I actually got an interview, let slip that the reason that they did not employ someone was due to them being in a wheelchair. Yep, I can hear what you are saying . . . outrageous, the problem is I only heard what she said and she was very quick to back track so not really a lot that can be said there. It's the whole choosing the battles you fight scenario again. But as I am sure you can imagine, this has knocked my confidence and doubt myself. I am also aware that there are many people in a worse position than myself, who aren't in a job and are finding it very difficult to find suitable employment able-bodied or disabled. I fear this is only going to get worse under this government as there are more people unemployed than there are jobs and so the opinion of employers will continue to get worse because they will want to employ people who are seen fit and able to do the job, especially with all other spending cuts that are being put in place like funding to Access to Work, that if you don't know about it helps remove some of the physical barriers for disabled people to allow them to work.

So all in all these are trying times, and I feel this is only the beginning of the fight for many disabled people, I am glad I am not a disabled child in this period as I feel that this will be a very sad time for those who are, with all the changes that the ConDem government are trying to enforce.

How is life as a disabled person in a mainstream world?

2011-02-07T20:23:00.000Z

I have spoke about some of my struggles of attending mainstream school, which were always made more difficult due to the continual health problems that I experienced but in this post I want to focus my attention to how I coped with the adjustment required to go through mainstream schooling and cope in mainstream society. Living with a disability no matter how 'normal' you are treated by people around you will always provide challenges that many able bodied people will not ever have to think about.

Throughout my schooling I experienced some high points but I also experienced some low points. Many of my low points were as a direct result of other people and their attitudes towards me and my disability. The low points when bullied which made me feel all alone. Outside of the times I was bullied I always loved going to school but when I was bullied my school life became miserable. Now I am older I can see its because people did not understand me, cliché as it sounds I was bullied because I was different. I only wanted to be liked and so this meant I tried to fit in and be the same as everyone else although this did not always work.

As I got older this made me stronger, I always felt that I had to prove my capabilities, which in turn has made me quite hard on myself. Some of these traits I have carried into my adulthood and am unlikely to ever change now. When I first went into mainstream I remember being provided with help and pushing this help away, I wasn't always able to do this in the best way and so most likely upset people along the way. I had to do this though to prove to myself and other people that I was able to look after myself and didn't need any special treatment just because I was in a wheelchair. As I have got older I have learnt to be more diplomatic and if I turn down help now I decline in a much more polite way.

The main time that I feel I grew as a person and really began to experience life as a person rather than as a disabled person was when I went to Upper School. During my time at the school, life was not always easy and there were times that I was still bullied but I can look back at this time with much happier memories.

It was the time when I met real friends (some who I am thankfully still friends with today) and experienced real life. I went to parties, I went to the cinema, I had crushes and relationships, I got into trouble but most of all I learnt what it was to be treated like everyone else. I belonged to a group of friends who wanted to know me for who I was. I went through the same stages that all my friends went through, I had exam stress, too much homework and feeling sorry for myself but so did my friends. Although this is true, there was daily tasks that were always much harder for me which meant that I became tired quicker, I always have to give myself longer to get out especially when in the car because it takes time to get my wheelchair in and out of the car. This is also things that added to the difficult times because no matter how much people seemed to understand, could they ever understand fully?

I learnt then that I didn't cope with stress well and this has stayed true into my adult life. Unfortunately I didn't learn how to cope with it then and so at times found it very hard to cope with. I don't find it much easier now but at least I can recognise when I am getting stressed easier now and so it is easier to control the fall out of this happening. I came away from my GCSE year with something to show for my hard work and so then progressed into the Sixth Form to carry on with my studies. I did reasonably well in this time, few ups and downs but I coped it gave me more time to grow as a person and grow in confidence especially after passing my driving test which I was going to learn was the best thing that I ever did as it gave me the independence that I required.

How did a disabled person cope when she attended a UNITE anti-cuts Conference in London independently?

2011-02-06T11:49:00.000Z

I am back in the present for time being due to what this day meant to me, it was a day of firsts. It was to be the first time I had travelled on the Train to London before on my own and the first time I had been to an event like this on my own. I have had many a bad experience on the train even with someone there to support me.So how did I cope with this experience?

A couple of days before I rang up Special Assistance for East Midlands Train Service, the person I spoke to was very helpful and reassuring which put me at ease. She gave me telephone numbers to contact people, if for some reason the travelling did not go to plan.

I approached my day with apprehension, as I said earlier it was a day for firsts so wasn't sure what to expect. The morning came and I got myself ready to go out. My husband dropped me at the station and ensured that the first part of my experiences went without a hitch (which it didn't). When I arrived at St. Pancreas International, I looked out for someone and thought they weren't there to meet me. Out of nowhere a lovely chap met me and got me off the train, and came with me to Euston Road where he left me to continue my journey.

I now had to use my own knowledge of where I was going to find the place. This started reasonably well once I got my bearings, so I went on my way following the directions I had been given. On my journey I came across a massive group of EDL supporters, who were being very loud and obnoxious (drinking at 9 in the morning has this effect on people). They made me nervous and so I was happy when I was away from them.

As I followed the directions I had, things seemed to be going well, then I got lost! I ended up going out of my way, but thankfully got on track again and with a little help from GPS on my phone and a lovely old lady managed to find my way again. I arrived just on time, the usual suspects were outside selling their papers etc. Had a quick chat with them before going inside (once upon a time I wouldn't have coped with just that experience). Once inside everyone was very helpful and put me at ease, directing me to where I needed to go. Within minutes I met another wheelchair user who I learnt throughout the day everyone seemed to know and he was very popular. He also became a very useful person to make contact with, which will hopefully lead to more involvement in the union at an equalities level.

The day continued in a similar way, people being very helpful and friendly. The first part of the day involved all the attendees sitting in a hall listening to a variety of different people sharing their knowledge. This was very interesting especially as it allowed me to put a few faces to the names I had heard. We then went on to different workshops that involved sharing their experiences, this was good although a little repetitive at times. I continued to tweet throughout the day, to inform people how it was going.

Just before lunch was announced, one of the main organisers came to me and asked would I like to get some lunch before people arrived on mass, so I with the other wheelchair user Sean, went to get some lunch. I was quite grateful for this as 400 + people trying to get lunch was actually quite a nightmare!

After lunch we had another workshop, to go to. I went to the Equalities For All session, which unfortunately was in a different building, because of numbers. It didn't matter too much as it wasn't far and I was shown by Sean where to go. Within the Equalities For All session, there was some interesting comments made, although there was an instance where an individual started to rant about the union. Thankfully he was reined in and others were allowed their say. I found my confidence to say a short piece about my experience of employment and how it lacks equality at times. The response I received after I spoke was very good which meant I was pleased I shared my thoughts.

It was then back to the main hall for the last talks before the end of the day. These were interesting, although unfortunately by this point I was beginning to feel tired and not listening as intently but I continued to use twitter.

I had to leave a few minutes before the end, due to having to get back for my train. I was going to get a taxi but as best laid plans go did I see one until I was nearly at the station? No. I ended having to use GPS to get me to the station but my phone battery died part way back. Luckily it survived to get me out of the difficult bit and I managed to remember how to get back without too much trouble, although not sure I ended up going the quickest route!

Back at the station I waited for someone to meet me at my designated place. I was told to ring a specific number if someone didn't turn up but as I just mentioned the battery on my phone had died so that was not possible. I only waited a few minutes before I started to get a bit worried. I started to look out for someone to ask, but no luck. I asked someone from first capital connect and they suggested that I went to an office which was really near. So this is what I did. Once I was there they were very helpful and got it sorted for me straight away. Another nice person met me and helped me on the train. He reassured me that he would remind Bedford Station that I was on my way. When I got back to the station there was someone waiting for me and so my day ended well.

So although my day didn't go completely smoothly I have learnt from my experiences and am glad that I went as it has allowed me to network and feel part of something. Although I wouldn't choose to do it on my own I realise I coped well enough not to be too scared of the experience if I needed to do something like this again.

Overview of my transition from a Special Needs School into Mainstream School

2011-01-31T20:57:00.000Z

Time to talk about my experiences of education as a disabled person. As mentioned previously I spent till the age of 9 in Special Needs Education. This time allowed me to become more independent and much time was spent in Physiotherapy, Occupational Therapy and Speech and Language Therapy sessions. Thirty years ago, children were regularly put into Special Needs School because the provision was there (I was share more views on how this has changed in future posts). My parents were always keen to get me into Mainstream Education but knew they had to be realistic about my needs and so bided their time until my health improved and they felt I would be able to cope in Mainstream Education.

During my time at the Special School I learnt a lot about independence and being part of a group, but academically I was never pushed at the school. This meant that I was never pushed and regularly became 'a bit cocky' as I was always completing the work quicker than everyone else in the class.

After a while my parents started the long process of trying to get me into Mainstream School. This took quite a while from what I gather and there was lots of compromising along the way. My parents wanted me to go to the local Lower School but due to there being another school with better access in another village it was agreed that this would be the school that I would attend.

To ensure that I coped I was phased into the school, initially attending once a week, then twice etc. This was in Year 4 of Lower School. After a year of phased attendance it was agreed that I would attend the same school for a full year, rather than go up to Middle School with the pupils of my year. I am glad this happened at this point in my education rather than later on because I adjusted to the idea quite quickly. For the rest of my education I was always a year behind but more often than not this wasn't noticeable.

Adjusting to Mainstream schooling was not always easy, I suddenly wasn't the top at everything and had to work at being middle of the class. My teacher for the full year at Lower School was what I needed. I was encouraged to get my literacy and numeracy up to the same level as other people in the class and by the time this year had finished my literacy and numeracy skills had increased immensely and in most areas I was achieving average and above results. When attending the Special Needs School, these weren't seen as important as independence and mobility which meant that at the beginning of the year I was at a disadvantage to many in the class. This year meant I was academically set up for my future schooling.

Although my first year of full time Mainstream schooling was a success academically, there were some tough times. I was quite obviously different to the children who attended the school and although I gained friendships there were still a number of occasions that I fell foul to the children who didn't understand me or my disability which led to times of bullying. This was hard as all I wanted was to be the same as everyone else and be liked by everyone. Thankfully there was little bullying at this time, but it did prepare me for what it could be like. Throughout the rest of my education there were plenty more occasions I would learn what it is like to be at the end of a bullies harsh words, but I will come back to this when I talk about future education experiences.

Before this year was out my parents spent much time discussing what was best for me and the future education that I was going to receive. Another hard decision had to be made by my parents and although they wanted me to go to the same school as my peers, it was agreed that there was another school in a different village which could cater for my needs better. This meant I had to make new friend all over again, I tried to keep in contact with some but this became more difficult the more time that passed.

I want to come back to my Middle School experiences in more detail at a later date as this post is allowing me to set the scene and give a general overview.

I then went onto Upper School, again my parents went into discussions about what was best for me and although there was some compromising the right decision was agreed upon. It allowed me to move up with the friends I had gained from Middle School as well as meeting up with a few of those friends I gained from Lower School.

My time at Upper School had its ups and downs but as with Middle School I will discuss some of these times in more detail at a later date.

Some early years experiences as a disabled child in the mainstream world and the way her family coped.

2011-01-26T21:01:00.000Z

On the back of my health problems, life continued as normally as possible. My brother and I went to school, my mum and dad went to work. My school life started at the age of 2 and a half when I started to go to nursery which was part of a special needs school where 5-18 year olds attended.

I started as most children do, going once or twice a week for a few hours here and there. I then progressed through the years and stayed at the school until I was 9 yrs old. During my time at the school, my parents were always keen to get me in mainstream education, although they were cautious for the first few years of my life as they were unsure of my cognitive ability and whether I was going to have a learning difficulty making it difficult for me to learn due to the complications of my shunt. I will discuss my school experiences in more detail in a future post.

As the years progressed and my health became more stable, I began to lead a more 'normal' life. I was finally allowed to go on holiday with my family to Majorca which was obviously quite an exciting time for the whole of the family. This time allowed us to be like a normal family, having fun with my brother, mum and dad.

As mentioned above at the beginning of my post, life carried on as normal as possible for the rest of my family as well. My brother who is 3 and a half years older than me continued to join in at school and do normal boy activities like cubs and scouts. He had his own health problems as a child which made life quite challenging for my parents, especially when I was in one hospital and my brother was in another. Thankfully as a family we got through these times and it is probably what has made us stronger as a result.

While all this was going on, my mum and dad also went to work, dad full time as a pig farmer and then went back to building while my mum worked in an office part time. The company that my mum worked for was quite understanding of my mum's needs and would give her time off at short notice, allowing her flexible working conditions. This was needed as my mum was the main person involved in the regular hospital visits that I had to attend.

This and previous posts written are only a brief outline of some aspects of my life and things that I have experienced, in future posts I will speak about these in more detail as well as new aspects of my life.

life for disabled child between 0-5yrs olds in the mainstream world

2011-01-25T09:49:00.000Z

After surviving the 3 weeks that my parents were told I wouldn't, my parents began to realise they had a fighter for a daughter. This brought them strength to carry on and do their best by me. The first 5 years of my life were challenging for the whole family not just for me.

My shunt being fitted was only the beginning, with this came problems that were going to affect my life in a massive way especially with regards to my childhood. In the first 5 years of my life I was in and out of hospital regularly due to problems with my shunt. On more than one occasion I was given life saving treatment at Great Ormond Street Hospital. I owe my life to the doctors and nurses who regularly looked after me through these years.

Many of my memories of this time, are through what I have been told by family and as I get older I am now able to appreciate the seriousness of my health problems as a child. There was more than once that my parents thought that they were going to lose me and I required life saving treatment, not least on Christmas Eve of my 5th year. Within this year I was in and out of hospital many times and although it is awful to have to go to hospital, Great Ormond Street Hospital always tried to make it easier for the patients and their families. In the summer of this year I was in hospital again and the patients got the opportunity to be involved in the filming of the Sooty Show Christmas Special. Unfortunately I got the opportunity to watch the show on TV while in the hospital again.

The time in the hospital was not the only problem experienced throughout this time, each time I came out of hospital I 'became a different child' as my mum described it. This meant that I regularly had to re-learn skills that children of my age took for granted like being able to feed myself.

My visits to hospital became less frequent after a while and I was given the opportunity to grow and begin to experience life as a child. In future instalments I will write about my relationships with different family members, school experiences, and many adult experiences. Although the rest of my life has continued to provide me with challenges as I became older I began to experience more positive moments which I will look forward to sharing with you.

The first few days as a disabled person in a mainstream world

2011-01-24T21:36:00.000Z

I was born in 1981 into a world of uncertainty and of course a conservative government. Through the posts that follow I will talk about what it is like to grow up with a disability and the issues that I have had to deal with throughout my life. So how did my life start? I was my mothers second child and so she thought she knew what to expect. During her pregnancy she was sure there was something not quite right with her baby and as such she regularly told the doctors this. As was the case then my mum was told not to be so silly and that there was nothing wrong with her baby. This still happens now but with technology as it is now, this happens less frequently.

When I was born, my mum was proved right, as soon as I was born I was taken and put in an incubator. My mum at this point realised that she had been right all along and that I had Spina Bifida. My chances of survival were not good, only being given a few weeks to live. 30 years ago it was common place to put babies into care without a second thought. Within hours of me being born my parents were asked if they wanted me to be put up for adoption. As you can imagine, my parents had a lot to deal with at this time but one thing they did know was that they would never do that to one of their children. So their answer was obviously no, thankfully for me.

So . . . I survived longer than a couple of weeks, at which point it was decided that I should be given the operation to close the hole in my back, to prevent infection and limit any other problems that this may cause. After the operation (as a result of waiting) I then developed Hydrocephalus which meant that are shunt was inserted to drain fluid from the brain. (future blogs will include the problems this caused in my childhood). My parents were then told the likelihood was that due to my health problems I would not live past 5 years old, again I survived past this age and I am now here to tell the tale. This is a simplified version of my first few years which I will talk about in more detail later so please come back and follow my journey that I have made.