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Wednesday, 13 August 2014

Coping with Depression

This post will discuss my own experience of depression and what helped me to get through the tough time I was experiencing.  I decided to write this post on depression because writing has helped me in the past to release my thoughts and feelings about subjects that would normally eat me up inside and so I hope reading will also help in some way.

When the subject of depression and on this occasion suicide is discussed in the media, I find myself having very mixed emotions. Firstly I am sad for the individual and their families, looking back over your life and how they have touched your lives even though you did not know them personally. I have also found due to my own problems with depression it brings back memories of when I was at my lowest. On a bit more of a positive note I find myself being relieved that for a short period of time as individuals will feel more able to talk about their experiences. I also feel it helps to  raise awareness of what a debilitating illness depression can be and how sometimes people find that there is just no way out.

I find the memories that it brings back the hardest aspect to deal with, as I have learnt to cope with my depression but I know it is there and always will be. My mental health will always be fragile and I know that I will always have to work at keeping my mood stable, not allowing it to drop below a 'manageable' level which can be tiring and is when anyone with depression can be at their most vulnerable.

At my darkest hour I had suicidal thoughts, it is difficult to put down in words what this was like for me and unless you have been this low I don't think anyone can understand what it is like. Your ability to reason goes out the window and I can imagine those individuals who do take their own lives in the end have lost the final bit of reasoning that I was fortunate to have. This is only my opinion and my way of making sense of the process I went through because something stopped me from taking that final step, be it my ability to reason with myself or be it something else it is difficult to understand. When I was at this point in my life I could not see how anything could improve, the pain I was feeling and the pain that in my opinion people around me were going through because of how things were was enough for me to think it was time to end the suffering I was causing. One statement that gets thrown around is that those that do it were being selfish, I don't see it like this. People who get to this point are not thinking straight, thoughts are skewed and I felt I was being selfless as those around me were suffering because of how I was and I wanted to end it for them.

 When depression is part of  a persons life it can be difficult on everyone not just the person that is suffering directly. I am thankful for the support I received from those closest to me at the time. I have always found it difficult to accept help of the physical or emotional kind and so the support I was given was not always taken with open arms. I learnt to hide how I was feeling and did not feel able to talk to my husband or anyone else close to me for the concern that I would upset them and would be a burden. As a result of this it took a lot to swallow my pride and ask for help, after a lot of support already given by those closest to me.

Depression is something that I was unable to hide from everyone but I still feel unable to talk to many of my family about it as I feel there lack of understanding and misguided opinions on this matter would make it worse. Depression is still something many people will not talk about and have misconstrued ideas about what depression is and how it can be managed. At the beginning of this post I spoke about feeling relieved because it meant that people would feel more able to talk about this issue a bit more openly for a short period of time. Over the past few days I have noticed an increase in people feeling more able to talk about this issue. I continue to not feel able to talk to my family directly about the issues I face but perhaps maybe there are people out there whom feel more able now than they once did, preventing them from reaching the point that people like Robin Williams and many others before him have done.  

As mentioned above, my illness is more stable now and I feel more able to cope. Cope is the main point here, I have learnt coping strategies to deal with my depression and know if I don't do something that helps with this then I am opening myself up to experiencing lows like I have done before.

 Being able to look back on my own experiences has meant that I have learnt how to help others who may be struggling through life. Helping others can actually be more difficult at times because you feel helpless to know what to do. At this point I try to remind myself what they did for me and it can be as simple as just being in their lives as much as possible to show that they are not alone. If you know or suspect someone of having depression quite simply show that you are there, don't push them to talk or tell them to snap out of it. It can be as simple as sending a text showing you care.

 The support of those closest to me definitely helped me to feel less alone and more able to fight the illness. If you are the one going through it yourself, try and find someone to confide in, if you don't feel like this is possible there are other places to find support including the Samaritans and the charity Mind. When I was at my lowest one thing that helped was using a set of books by Matthew Johnstone titled ' I had a black dog' . These books were suggested by a friend and there are a number of them in the series looking at different parts of living with depression. I found they helped illustrate how I was feeling and they will still be used at times now to help explain what I am going through.

Depression is an evil illness which is more difficult to explain than a broken bone, it can not be seen but it doesn't make it any less real. There is evidence that it is a chemical imbalance in the brain and so has medical background rather than 'just being an emotion'. Some people will be more likely to suffer than others but the first step to ending the stigma is for everyone to learn more about the debilitating illness so that if you know someone that is suffering they can receive the help that they need rather than feeling that their only option is to suffer in silence. We need to keep talking about this issue to help those that feel they can't talk about it and to stop that feeling of being alone that so many people who suffer from depression will feel in their lives.

I hope this post is the start of people feeling able to talk about this subject more freely and so helping others to not suffer as I did in silence for so long.

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Tuesday, 18 February 2014

The truth behind First Capital Connect “Special Assistance”

The UK is one of the richest countries in the world; we live in a society where we have freedom of speech, where we are “free” to travel where we like when we like. Many people in 21st Century Britain commute on the train and nearly everyone at some point will have travelled by train. The ease, the simplicity of hopping on a train whilst it takes you to your destination when you hop off again enjoy your destination for as long as you like before deciding which train to take home. That is, of course, unless you are disabled when the situation is very different. 

This blog post will focus on First Capital Connect as that is who I use most frequently but it could easily apply to any other rail company as the situation is the same across the rail network. 

What they tell you about special assistance

They rail companies (in this instance First Capital Connect) tell you to ring their special assistance booking line 24 hours in advance and you will be guaranteed special assistance on your journey . The proviso is that you “make yourself known to a member of staff at the station when you arrive”.  The special assistance booking line will take your name, phone number and details of how you intend to arrive at your destination station and leave at your arrival station. They tell you that if you book special assistance you are guaranteed special assistance.

In an ideal world what should happen

You arrive at the train station and as you approach the barrier someone says “oh hello, you must be *Insert name* and you’re off to *insert destination*, your train is going from platform x do you need a hand getting over or can you manage to this yourself” *Insert reply* “Ok, I’ll meet you over there and I’ll have the ramp ready for you”. The member of staff will stay with you until your train arrives and ensure that you are waiting in the correct place on the platform to line up with the wheelchair space on the train. When the train arrives the member of staff will ensure that the designated space is free from obstruction, luggage and/or ignorant passengers, put the ramp down for and help you on. They will then say “don’t worry about the other end *Insert station* know you are coming and they were will be someone to help you off.” On the train if it is a Class 377 train (the more modern trains) the disabled call button will be opened up so if there is an emergency the passenger can contact the driver.

The reality is very different.

The Special assistance phone line:
I have been genuinely shocked by this service in the past especially what they can’t tell you. All this service does is put your details onto a central system so that “control” know you are travelling and a record is kept for statistical purposes. They do not tell individual stations any of your details, stations are just told that there is a disabled passenger coming on that day and this is rarely filtered down to platform staff. They cannot tell you whether the lifts are working at a particular station, they cannot tell you what platform a certain train is likely to be travelling from, and they also cannot tell you what classification of train it is i.e. whether or not the train will have a disabled toilet. These are all details disabled people may need to know before travelling on a train. In the past I have asked them to ring a particular station to ensure they know of an arrival but they cannot contact platform staff only the ticket office.  

On arrival at the station:
I have found out on various journeys (and by talking to staff members) that stations are not informed that a disabled person is coming and travelling through their station. You have to “make yourself known to a staff member” because once you get to the station you then have to request special assistance.  Platform staff also has no idea where you are going, so you have to tell them and they will then ring your destination so they know you are coming (they won’t have been told either).  A lot of staff don’t take the time to put passengers in the correct space on the train, especially with the 319 class (older trains) as it is not immediately obvious where the space is so they either put you behind the driver or in the nearest space to where they are standing. I will say not all staff members do this; there are some who genuinely take the time to do it properly. First Capital Connect say that platform staff are trained in how to board disabled passengers, going by many experiences, this is either not true or the training isn’t very good.  Platform staff then rings your destination station to let them know you are on the train, and again this doesn’t always happen. 

On the train:
Class 377 trains (the newer ones) are far better for disabled people as they have a proper area and a disabled toilet but sadly they are prioritised for commuters and rarely used off peak and at weekends. The picture below is of a covered emergency call button, platform staff are supposed to unlock this so it forms a table and an emergency call button. I have spoken with several disabled people about this and most didn’t even know what it was, First Capital Connect will tell you that it is opened for disabled people, it isn’t and I have never seen that happen. 

 On the older trains (class 319) there is a smaller space with folding bench seats, this area does not always have signs to indicate that this is an area for disabled people. Disabled passengers are often put “behind the driver” (even if this is not the suitable location) for safety, I have queried this and been told that in an emergency a member of staff needs to help the disabled passenger hence being behind the driver. When you raise the question of the disabled area being in the middle of the train in newer 377 trains, they mention the call button (see above). 

Getting off the train 

The idea of “special assistance” is that once you have been boarded onto a train there should be someone to meet you at the other end, anyone who is disabled and has travelled by train will tell you that this is a lottery. There is not always someone to meet you at the other end, social media is awash with stories of disabled passengers having to crawl off trains with their wheelchair, or being found by cleaners as they have just been left on a train. Personally if I have to travel on my own I choose a train that  has its final destination as my destination so I won’t end up at another station, if I can’t travel on such a train I ensure I am travelling with someone else who is able bodied.

Why book special assistance?

First Capital Connect say to guarantee special assistance you have to book. I have to admit I don’t always book 24 hours in advance, this is because I don’t always know what time I will be returning. If I am going out for a day trip somewhere or a meal out in an evening, it is impossible to predict how much fun I will have (or not) and I may want to stay later or come back earlier (as anyone would). As I have already said, booking special assistance doesn’t actually “book” anything it just creates a record, and it makes no difference to your journey, in the evenings many stations only have one platform assistant working even at stations that serve international airports (Luton Airport Parkway) and booking special assistance does not increase staffing levels. So why book Special Assistance? So you have grounds to complain, it is in fact a pointless service. 

Why blog about this? 

I am sick of it happening to me and to other disabled people, when you complain to First Capital Connect nothing happens. In the past I have complained to my MP, in reply I received a letter of apology from First Capital Connect and was given free travel on the journey of my choice.  I don’t want free travel, I don’t want an apology, what I want (and what every disabled passenger wants) is for the system to work properly and the changes to be made so it does work properly. When I tweet First Capital Connect they refer me back to the Special Assistance helpline which, as already discussed, is useless. Some people may see this as an opportunity to attack the rail unions, to be clear on this issue I know for a fact that the RMT campaigns on increased access across the railways and would like an end to Driver Only Franchises (of which First Capital Connect is one) so there is a member of staff on board every train to help.  I have spoken to many staff (usually the ones wearing an RMT pin badge) and they blame the system, many of the staff are hardworking, considerate and would agree with me about the system not working. Without them talking to me I would not have the information I need for this blog. It is time we opened up access to the railways so disabled people can travel as easily as able bodied people. 

I would welcome the opportunity to discuss this with First Capital Connect the issues raised but this has never been offered and in fact I am told that I am wrong and politely sent on my way.

Tuesday, 1 May 2012

Barriers to Education

Before I start with this post I would like to bring your attention to Blogging Against Disablism Day. For more information on what this is and why it is important here is a link for you to follow

It is important to think about what the phrase 'barriers to education' means before I go on to talk about my own experience of education. According to the Open University article: Barriers to Learning, barriers can be attitudinal, organisational or practical, although it is important to remember that sometimes there is no way to do this due to the nature of the disability and the problems that are experienced. As a result each individual should be treated differently and their needs addressed in the same way. The article I refer to also identifies that -

"The barriers to learning faced by students with disabilities are many and complex, and differ from student to student and often from day to day."
As such I will be only writing about my own experiences and understand that this may be very different to what others may have experienced.

"The article refers to the 4 A's when wanting to remove or lower the barriers to education, they are -

Access means physical access as well as access to the curriculum
Awareness of the needs of disabled people and the barriers they may experience
Acceptance that you may need to do things differently
Appreciation of the effects of hidden difficulties, such as pain, tiredness and emotional stress"

My experience of education has been very mixed, with some of my experiences and decisions that I have made being directly affected by my disability and the limitations that this brings. I started my education at a special needs school and continued on this road until I was 9 years old. All the experience that I have had through my education in both a special needs school and in mainstream education has influenced my life and the person that I have become now. The time in special needs education allowed me to become more independent and have much more access to services like Physiotherapy, Occupational Therapy and Speech and Language Therapy sessions than if I had been in mainstream education from the start. Unfortunately the main limitation for special needs education for me was that it did not challenge me at an academic level and if I had continued along this route I would not have had the same opportunities that I have had throughout my life so far. This is not the experience of everyone and there are many people who need that higher level of support that a special needs school is able to offer.

Thirty years ago, children were regularly put into Special Needs School because the provision was there and this view was not questioned, because it was commonly believed that disabled people did not need to be educated because they wouldn't be able to work anyway. The individual was not seen, it wasn't until this was challenged that children with disabilities are now encouraged to attend mainstream schools. This is quite a recent change in my thirty years of life and thankfully more disabled people are able to experience mainstream education and are provided with more opportunities because of this, although there is still a long way to go and still many disabled people do not have the same chances that their able bodied colleagues have through education and employment.

I also have concerns over the plans of the current coalition government including the proposals of the SEN and Disability Green Paper which on first skim reading sound like the government has an understanding of the needs of disability children for example it states-

"give parents a real choice of school, either a mainstream or special school. We will remove the bias towards inclusion and propose to strengthen parental choice by improving the range and diversity of schools from which parents can choose, making sure they are aware of the options available to them and by changing statutory guidance for local authorities. Parents of children with statements of SEN will be able to express a preference for any state-funded school – including special schools, Academies and Free Schools"

Its not until you read further and review some of the language used that it is apparent that the proposals will be bad for disabled children giving them less chances of a mainstream education than they currently do and in turn will increase the barriers to education -

"and have their preference met unless it would not meet the needs of the child, be incompatible with the efficient education of other children, or be an inefficient use of resources. We will also prevent the unnecessary closure of special schools by giving parents and community groups the power to take them over"

The above mentioned sections shows how the truth can be hidden in what they are saying. This above wording allows decisions to be made about a disabled child and what provision they should be provided, finding reasons for disabled children not go into a mainstream school just because the special needs school around the corner meets the needs of the child. I feel this will lead to the over use of special needs schools as it was when I was a child.

My parents were always keen to get me into Mainstream Education and were prepared to fight but knew they had to be realistic about my needs and the red tape that they would have to cut through. So they bided their time until my health improved and they felt I would be able to cope in Mainstream Education.

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 because there was always a school 'more suitable for my needs' than perhaps was the one that my parents wanted me to attend. 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. I coped well with this and I would say this was a positive way for myself. 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 first full year at Lower School was what I needed. He did not put barriers in my way, he enabled me to be part of education road ahead. 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. If you haven't got an education and qualifications to back up the independence and can do attitude that I was encouraged to have then what is the point. The main reason for schooling and education is to prepare and give children opportunities that they might not have if they are not provided with a good education. This year meant I was academically set up for my future schooling and lowered some of the barriers that had been put in place previously.

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.The children I went to school with were part of what provided me with a barrier to full education. I was regularly bullied to the point that I would not want to attend school and would pull a sickie just to avoid putting myself through it. Although I was always good at doing my work and I was able to get reasonable results it made me wary to attend and marred much of my experience of the education I received and limited some of my opportunities.

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. This led to a disjointed education again and provided me with challenges that most children would never have to think about let alone experience. The experience I am describing here is how things are going to be for all disabled children if the guidelines of the SEN and disability Green Paper are followed, with barriers to education increasing rather than decreasing.

The experience was much the same through out the rest of my education, with having parents fighting for the right for me to have the education I deserved and having students who misunderstood me and my disability leading to me being treated differently often due to my disability. 

Once I left school I did not go onto college or university straight away, partly for average reasons like not wanting to and not knowing what I wanted to do but also because it was much more of a challenge for me as I have to think about access issues rather than just what university has the best social scene. A number of years later I decided to improve my prospects through education by completing an Open University Degree. This is something that I have just completed and I am proud of my achievement as it was a very long road. The question of whether this will actually make a difference to my prospects is still unsure but at least I can say I tried and have given myself as much chance to progress in life and get out of a job that has no prospects. 

Many barriers to education I experienced could have been changed to positive experiences if there had been some simple changes in the way my education and my disability was approached. Referring back to the 4 As that I mentioned earlier, to achieve this individuals and organisations need to think about these and through education of adults and children barriers to education no longer need to be an issue. We need to challenge the current disabling attitudes and practices. As a society we need to give ALL our children the opportunities that they deserve not the select few that current government policy is currently giving an advantage to.

Saturday, 7 April 2012

No we can't or yes we can, what response would you prefer?

I am currently in Torquay with my husband who is a teacher for the annual conference for the National Union of Teachers. Although everything seems calmer now that is not how my experience of this weekend started. It started before the weekend when I did some research into the hotel we were staying at (the room was through a block booking and so did not have the same control). I decided to look into it for my own peace of mind and glad I did. The hotel we are staying at is the Rainbow International and all information I found on-line did not fill me with confidence that it would be suitable. As a result my husband contacted the hotel for me on my behalf to ensure that it was suitable for my needs. When he rang up, he was reassured that we were to get the fully accessible room and that we would not be moved. This room was designed around a specific person and although this is the case we were guaranteed to be getting this room due to my specific needs and being more physically impaired than the individual that the room was specifically meant for even though the other individual was expecting it. So what was the reality...

We arrived, booked in and went up to our room, I should explain now what level of disability I have so that you can fully understand the unsuitability of the room. I am a full time wheelchair user who when transferring needs to do a straight transfer. When we went up to the room it didn't take long to realise we had been given incorrect information and that they had gone back on their word. I could not even get into the bathroom let alone go to the toilet or use a shower which was a shower cubicle. There was no room in the bedroom for me to get around and so would have been incapable of being in the room on my own. When we went to reception to complain, there seemed a lack of understanding what was wrong and they were seeming incapable of fixing the problem that they had caused. The managers attitude was in fact ' no we can't' and denied we had been promised this room. This led to very angry people and a lot of shouting, this was made worse by the fact that no one was listening to me, the person who it was actually affecting. This arguing all took place in the reception area with people shouting over me and not involving me in the discussion. By this point I was finding the who situation quite distressing and was ready just to head home as up to this point the weekend was turning into a disaster.

Thankfully someone recognised what was happening and the inappropriateness of the situation and took me away from it, they then took charge which was the beginning of things changing for the better. When everyone met with me again people started to talk to me, not at me or above me and we finally started to resolve the problem that had occurred. This person admit herself that it wasn't until becoming involved in union based activity around disability that she began to truly take on board the difficulties that disabled people face. Although this is the case she is the kind of person who is able to use her own common sense and I am sure that she would have never have let this situation become as much of a challenge as it did. All it takes is an element of common courtesy and the time to truly understand individual needs.

Things shouldn't have been blown out of proportion like that in the first place though and hopefully the hotel have learnt from the experience. When they started really listening to me they started to understand my needs more and realised that they had a room that was suitable for my needs. They conceded that there experience of disability was limited and that their main experience of disability had been elderly people who have some mobility problems and so they felt that everyone's needs were the same. Once things were sorted out, we spoke calmly about what needs to be done and how to improve things for disabled people.  To make up for all the initial stress caused they have offered us one more night for free, in return I have agreed to talk about what they can do to improve their service. So this problem was sorted in the end, but then I go over to the conference centre...

Initially I ask where I need to go including where the lifts are and where the disabled seating is. I found a lovely young girl however she was unable to answer my questions which I feel should have been in her basic knowledge but she went to find the information out so I couldn't complain at this point. I went up to the floor to the "observers area" only to find that she had given me incorrect information and that once I arrived their using the lift there I found there was steps up to the seating. So I go and find someone else to ask. They call someone and then I wait some more (at this point the conference had started and people I was with were missing the start as well). We finally come across the accessible seating but because I didn't have the right pass (I have observer status not voting status) they wouldn't let me in even though they could see that this was my only entrance into the conference. This finally gets sorted and the solution is to get a different pass later on. That issue was sorted but then something else happens .... nature calls so I go to find a disabled loo. This was easier said then done. I found the ladies which I was able to get into but it really wasn't a disabled loo so I go in search of a disabled loo again. I finally found a very helpful maintenance person who showed me where to go but then I came across a loo that was locked. He went and got someone to unlock this and so hopefully when I go back today I will find an unlocked toilet.

I have told you this scenario in detail because it raises many questions about the misconception about disabled people and their needs. Some simple education of different needs could solve all the problems that I experienced. Disabled people do not want to be treated differently but we do have different needs to our able-bodied counterparts and this is something that we cannot avoid. There are a number of different disabilities and these people have varying difficulties but one aspect that can be addressed and is the main thing that I feel went wrong is able bodied people opening their eyes and think about what they are saying and how they treat disabled people. Going back to the scenario of the hotel. If they had listened and asked the questions in the first place then there would not have been the problem in the first place. I do not expect people to know the solutions from the start but if you don't know something just ask, don't assume as the assumption is what made it go wrong in the first place.  

Everything that went wrong here has gone right somewhere else and so in my opinion this shows me that if an organisation tries to work with disabled people that can get it right. Most disabled people are not unreasonable and if someone is honest and says they don't know what I need then that is better than them getting it wrong. Recently we went to look around hotels in Brighton for the National Conference in 2014. Some hotels were better than others but generally all had tried to make their hotel accessible and suitable for the needs of disabled people. One in particular due to its age had limitations but they had really tried to make it better for varying needs. This is all I ask for with a bit of honesty thrown in for good measure.

The fact that the reason for being put into these situation is due to a trade union conference is quite worrying itself. Trade unions pride themselves on equality and the rights of their workers but in reality through this conference I have experienced very little equality and equal rights by the organisation as generalisation. Although many of the issues are not directly related to the Union it is a Trade Union conference and everything reflects on the Union directly or indirectly. In saying this I would like to take time to thank those that have made the effort to understand me and understand the issues of disabled people as a whole because without them I would have given up the fight long ago. Trade Unions shouldn't just assume that because a venue is accessible the staff members in the venue know how to deal with different equality groups. The should also ensure that hotels in the area should have suitable accessible accommodation to cater for varying needs of delegates. I'm sure delegates with specific requirements wouldn't mind booking through the National Union if they could guarantee suitable accommodation. To date my experience of residential conferences is through my husbands union and I accompany him, it does concern me that if I become active in my own Union, UNISON, will I experience similar problems?

I'm not seeking a revolution just a bit of common sense.

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.