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Thursday, 23 February 2012

The challenge of finding suitable clothing for a wheelchair user

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.

Tuesday, 21 February 2012

Understanding how lucky I am

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.

Saturday, 11 February 2012

Making the decision to become a mother with a disability

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.