Archive | April 2014

Wrapping in Cotton wool

I have a lot to thank my parents for, they have been wonderfully supportive of most  aspects of my life over the years and done so much to help me achieve what I have in life.  Looking back one of the things I am most grateful for is  that they did not wrap me up in cotton wool and try to shield me from the harsh realities of the real world or treat me as precious object that would break if I was left alone to do my own thing.   They never once tried to dumb things down for me and treat me as stupid.  When I was diagnosed as disabled aged seven my parents rightly saw it as a physical thing and knew it did not affect my mind or my ability to learn.  Then some years later when we found out I am high functioning autistic and OCD they still did not treat me any differently.  It was also clear I had some learning difficulties, mostly with maths and logic, but they could see that I was not stupid at everything and it did not mean I had to give up trying and still could learn things.

I am sad to say that this is not always the case.  I spent three years in a special needs school for disabled children, but this was not my parents first choice for me, it was the only school left  that would take me at the time.  I met some lovely people, but it was often very frustrating how they were treated.  If you talked to some of my class mates they could come across as very bright people, but some of them could not do much for themselves.  Part of the reason for this I think is that they were wrapped up in cotton wool.  Firstly some parents seem to get scared when they learn their child has a disability or is sick in some way and then are afraid to let their child do anything for themselves just in case they hurt themselves or get more sick.  I am sure it is very hard for parents when they learn their child has a problem, but that is no reason to start treating the child radically differently from how you may otherwise have done.  Some parents may not even realise they are doing it, but there has to be a point when they think they are doing more for the child than they normally would surely?

Then there was how the kids were treated in school, in some classes it felt like I had not moved up a year, but gone backwards.  I was doing things I had done already in my previous school, but was supposed to be in a higher year  class.  I realise that some children got behind  somewhat having been off sick or in hospital, but some of my class were clearly smarter than they were being given credit for.  We took Entry Level Certificates for most subjects, which is basically a useless qualification in terms of getting on to a decent college course or jobs wise.  As an Entry Level Certificate is worth fourteen school attainment points at its highest level, which is less than the lowest grade at GCSE which at grade G gets you sixteen points.  I would have liked the choice to do more GCSEs in certain subjects and am sure some of the others in my class could have done them too.  I admit in some subjects I think Entry Level was about right, but we were given no say in the matter.  I think children, even special needs ones need a say in their own life in some way, especially at the age of fourteen and fifteen.  To be fair some teachers were good and saw that some of us had more potential and gave us slightly more challenging work.  I always enjoyed those classes more when I felt I was learning something.

For someone with special needs learning may take a little longer.  For me this includes practical tasks such as learning to tie my shoe laces which I took me till I was about nine or ten or learning to tell the time which I never fully mastered till I was about eleven.  However my parents, especially my mum, never gave up on me and refused to let me give up either.  If you do not have patience with special needs children and give them the extra time they need to learn things, they will end up very dependent for the rest of their lives.  All children need help and support, but they also need to learn independence and the  skills that will help them achieve that.  I realise that not all special needs children can grow up to be independent, but if given the chance when young to learn I feel a lot more could.  Special needs people are not always as vulnerable and incapable as some people may think.

My Benefits life

‘Disabled people pay “a financial penalty” on everyday living costs, spending an average of £550 a month extra, according to a report by Scope.’http://

I have been on benefits most of my life.  The way the media and other people talk about benefits makes this fact sound like something I should be ashamed of, but I am not.  Sometimes you hear older people say, that they are entitled to benefits as they paid into the system all their lives, I admit I have not paid much into the system at all.  Even when I have worked paying jobs one of them was between college and university so as a student I got my tax payments back a year later.  However being entitled to the money, why should I not take it, I need the money to live on.  I have tried very hard to get paying work and feel that it is not my fault I can’t pay tax into the system when no one will hire me.

Last year is the first time I stopped receiving Disability Living Allowance in twenty years.  My mum first claimed  it in my name when I was eight or nine.  I got it mostly for my Perthes Disease as I could not walk well, but later on she also got a care component for a few years due to my mental health issues as I was more work than a child of that age should have been.   When I turned eighteen I started to get the money myself.  I was by then just getting the mobility component, but found the money very handy.  I certainly needed it when I went away to university to pay for taxis to places some people might have considered walking distance.  For  example at one stage I was having weekly physiotherapy sessions at the hospital and it would cost me £5 a time to get the taxi there, as it was too far to walk to the bus station in town and then from the bus stop to the physiotherapy department.  When my old hip became too much to bear I purchased my own crutches as I knew the hospital waiting list to see physiotherapy about them was long and being in my final year at university I could not wait for them.  I got them online and they  came with a small delivery charge as well.  I think I got them at a very good price, but being a student without much money, I was glad of my DLA to help with the cost.  After my total hip replacement surgery they left me on DLA during the recovery period as it was not like I was instantly up and walking without any problems.  They leave you on DLA for about a year or so until the doctor signs you off to say it was successful, as that is about how long it takes to fully recover.  By this point I did feel like I was no longer entitled to the money, my circumstances had changed, I was walking much further and doing more for myself.

Claiming DLA was not an easy task.  As with most benefits the form is a full on booklet with many questions.  I  am glad they are thorough, I don’t like the idea of people falsely claiming benefits anymore than the next person, but they do ask some questions which are very hard to answer.  In the old DLA forms they used to ask how far you could walk, but in my case but varied from day-to-day.  Many disabilities change daily and many of the questions assumed that it stayed the same all the time.  I just put in my worst case days as although I might have been OK sometimes, if on the day I had to go out was a bad one, then I would need the money.  DLA has now changed into Personal Independence Payment which I gather are just as hard to claim for as DLA if not harder.  These forms are so hard to fill in as part of her job my mum has been on courses on how to fill them in.  They no longer give anyone life long benefit awards, everyone has to be re-assessed, even if you have something you can never recover from such as a missing limb or total blindness, yes because limbs just grow back magically and eye sight just recovers!  I was on low rate mobility which is now called mobility standard, which currently gets you £21.55 a week, which is not very much when you consider the average price of a taxi anywhere these days.  The most anyone could get on PIP now is £138.55 per week, but that includes both the enhanced mobility payment and the enhanced daily living payment.  This might at first sound quite generous, but there are extra payments some very sick people need to make such as using more central heating as they get more cold from not being able to move  as much or more electricity to charge up their wheelchair.

Right now I reviving just the one benefit,  Employment Support Allowance.  This is the replacement benefit for Incapacity and some types of Income  Support.  I am only on it now on a temporary basis as I managed to go and break a bone in my foot.  For about two months I will get a little over £66 a week.  I get a little less than some due to the amount of savings I have, so the more you save up the less ESA you get.  People on benefits are  often penalized for being careful with  money and having managed to scrimp some savings together over many years,which is not easy to do on such a low-income.  I have been on ESA before after my hip surgery for a few months as I clearly could not work.  Some years ago whist at college I was also on Income Support because due to my hip I had the stamina to either go to college or work, but not manage both.  Some would say I should have worked instead of going to college, but how is  a disabled person supposed to better themselves and get even a semi decent job if they can never get an education.  Why should I not get the  same opportunities to learn as everyone else.  Whilst on ESA you can work and earn up to £20 a week in addition to the benefit, which for some people who have not worked in a very long time or ever, it might be a way to slowly get used to the world of work again.  However £20 would not cover the transport costs for a lot jobs let alone make you  ant profit.

I will soon be back on Job Seekers Allowance yet again,which is a bit depressing as I never seem to get off it for very long.  I been off and on Job Seekers since I left college aged twenty-one.  I have come off it a few times, twice for temporary seasonal work and for University.  I think of all the benefits that I have been on Job Seekers gets me the most flack.  I have been called too lazy to get a job, been told  there are jobs out there if I really wanted one, asked why hard-working people should fund my lifestyle and worst of all been called thieving scum.  I would be the first to admit I am somewhat of a lazy person, but I have tried very hard to get a job.  I fill in application after application, attend  every interview I get, go to all my job support courses and meetings when I can and keep an eye out for jobs when out and about in shop windows and on notice boards. I am not that fussy about the type of work I will do, I have applied for shop work, cleaning, basic office jobs and even once as a litter picker.  There are jobs out there, but there are also hundreds applying for each job in some cases.  Since I am entitled to the money and fit the required criteria how does that make me a  thief?  Job seekers gets me £71.70per week, which I find perfectly OK for my circumstances, but if my parents were less generous and made me pay a lot more rent, or even made me move out I know I would struggle on that amount.

My advice for anyone who needs to claim benefits, if you have any doubts about how to fill in the forms go to your local Citizens Advice Bureau as they have advisers trained in benefits and can help fill it in correctly with more of a chance of getting a successful claim.  They can also tell you if you can claim for  any more types of benefit.   I hope to one day get a job that means I can stop being on any benefits for longer than a few months.  I do not like the fact I have to claim benefits, but without  it I would have no income what so ever.  People can not live on nothing.

Confined to a wheelchair

disabledThis is the symbol used universally to represent disability.  You see it in many places such as disabled toilets and disabled parking spaces.  It is a very useful symbol I admit, but it does not represent everyone who may consider themselves as disabled.

To be disabled means to be confined to a wheelchair all the time, right?  Wrong!  Some disabled people are wheelchair bound, but an awful lot are not.  Before my successful hip replacement I used a wheelchair, but not all the time, I used it for long distances, as it would get too painful to walk a long way.  Some days my hip would be more painful than others and on my bad days I would use the chair more.  This concept of a fluctuating disability was very hard for some people to get their head around.  How come I turned up to school one day perfectly able to walk and the next I turned up in a wheelchair?  Someone cruel once said I must be faking it to get attention.  I got no extra help from support staff on my bad days in school and no one would offer to push me in my manual chair, and this was in a special school for disabled children.  People were confused, a disability does not change from day-to-day, either you are unable to walk or not was how people seemed to think.  The looks I got when I was in my chair and suddenly stood up to reach something or got out and walked were sometimes quite funny.

At various points in my life I have used crutches or a walking stick to get about.  When on crutches I sometimes got asked what I had done to myself to end up needing to use them.  People seem to associate crutches with broken bones or injuries of some kind.  It was kind of hard to explain about a hip issue that I was born with.  Crutches are for the clumsy it would seem, not the disabled or so people assume.   With a walking stick people still expect you to be able to walk quite a long way it seems, having been made to walk quite long distances by various college tutors.  I think a walking stick confused some people as they are not seen as something young people would use.

Until a year ago I had a disabled parking badge.  Although I can not drive, I used the badge with other people when they drove to places with me.  It helped me to park closer to the place I was going or to have a bit longer parking time as I walked slower than most people.  I went though fazes of not using any walking aides at all, but still could not walk long distances.  The number of people who assume that as you are not using a walking aid you must be faking it or ‘borrowing’ someone else’s parking badge is quite high.  Most people never said this to my face when I got out of the car, although I did see some funny looks from time to time.  I found this out on a Facebook group I joined for people angry at those who misuse disabled parking spaces.  They post some very rude, angry comments about people using badges with no walking aids what so ever, but loads of us always comment back saying not all mobility problems and disabilities can be seen and we try to explain that you get a badge on the grounds of how far you can walk and not how you walk.  Not all disabilities have a visual to go with them such as a walking aid or clear deformity.  I think hidden disabilities are one of the hardest to convince other people of, that they are real and do have issues that go with them.

I think some people need to rethink disability, not all disabled people are alike.  A lot do not use wheelchairs all the time, some may never have used one.  People are often too quick to judge someone without knowing anything about them.

physically-impaired-symbols-london-1024x216I think these symbols represent disability more realistically than some and show how it can vary.

Out and About as a Disabled Person

Recently I broke a bone in my foot, which was a pretty dumb thing to do, but having fallen on the stairs it could of been worse.  I am now in a cast half way up my lower leg and on crutches.  Me and crutches have a history, having been on and off crutches since I was seven due to my hip problem.  Having been out and about again on crutches has got me thinking about the little things you fail to notice or are not a problem when you are not disabled in any way.

Firstly there is the challenge of getting to were you want to go.  I do not drive, so I often have to take public transport if I can not get a lift from my parents.  I am lucky in that I live very near a good bus route and near a main line railway station.  I think modern buses have got better at catering for disabled people.  Over the years I have seen them introduce low floor easy access buses, which means they can lower the bus to be closer to the kerb and can pull out a ramp on request.  There is normally space for at least one wheelchair and priority seating at the front of the bus for people who struggle to walk further back or can’t stand when the bus is full.  The buses themselves maybe better designed for disabled people now, but the bus drivers however do not seem to be much better trained in dealing with disabled customers.  They may have this easy access floor, but it is hit and miss if the driver uses it or not.  When I have seen people ask for the ramp some drivers are happy to help, but others mutter under their breath and act as if it is a major undertaking they have been asked to do.  On crutches I sometimes struggle to get off the bus in time before it pulls away from the stop.  Drivers almost seem to expect you to be standing near the door  before the bus has even stopped.  If you are not standing there some drives assume the bell was pressed by mistake and drive off again.  On crutches it is very hard to stand-up and walk in a moving vehicle, your balance not being at your best.  I do not like to get up too soon in case the breaking of the bus causes me to fly forward with my crutches and make a fool of myself in front of a bus full of people or even whack someone by mistake with a crutch.

Trains and railway stations are sometimes impossible for disabled people.  Sometimes you can’t even get onto the platform you need in the first place, the lift, which might have taken some finding being hidden at the far end of the station behind a pillar quite often, can be out of order, which when you are exhausted from having had to use crutches all the way there can be very frustrating.  Some stations, mostly in London on the underground system have no lifts at all which can make it very tricky for some people.  I am lucky that I could manage stairs if I had to on crutches, people fully wheelchair bound were really stuck.  If you do manage to get to the platform you need, you then need to find the assistance you have pre-booked.  (So no last minute spur of the moment trips for disabled people that want help to get on and off a train, you have to pre-plan your travel with at least twenty-four hours notice.)  Sometimes the assistance is fairly easy to find with the person standing in the middle of the platform in a high vis jacket waiting for you, however on more than one occasion I have failed to find my booked assistance, getting off one train to a completely deserted platform with no one even to call out to, to come over and help me get down from the carriage.  Most trains now are supposed to have ramps they can attach should you need it, but if there is no member of staff around to do this you are often faced with a very large gap between the carriage and the platform to try and climb up or down from, and with osteoarthritis in my hip this could really hurt.  Then the is the whole business of trying to take luggage on a train when disabled and not able to carry a darn thing.  You could get a taxi and save yourself all this trouble, but if you go more than a couple of miles it will cost you a small fortune.

When you reach your destination things may not get much easier.  The town centre is often an obstacle course, with many hazards for disabled people to avoid.  The pavement itself can be a problem, with slabs having worked loose or been put back poorly by road workers.  My crutches have been known to get caught on the edge of a paving slab causing me to trip painfully.  In a crowded area other people can be a problem.  I do try to keep my crutches as close to my body as I can whilst still being able to walk, but people still seem to find a way to trip over them.  This is often people who are too busy looking at their mobile phones to look where they are walking.  Some people stop in the middle of the pavement to have a long conversation.  When in a wheelchair or on crutches it can be hard to go around them , so when I politely say excuse me, why do some people act as if I am being really rude.

Shopping can be hard as well.  Some shops have large thresholds that are hard to get over, and some disabled people have to wait outside whilst their friend or carer goes in for them.  Some shops do the pile them high thing, getting out as much stock as possible onto the shop floor, while it is nice to have a lot of choice and variety, having rails crammed in close together can make it very hard for anyone to get around , let alone for a disabled person.  I have been shopping with my friend who uses a wheelchair and sometimes she will go between two rails and end up brushing things onto the floor with her chair as the rails are that closely placed.  Supermarkets are a little better now with wide isles and things kept to the sides.  However clothing stores where the floor plan can be rearranged at will by the manager often fail to think of disabled people.  Having a clear laid out floor plan in a large shop can also mean people with mobility issues do not have to walk round and round for ages to find what they want, getting too tired to do anything else.  Shops who fail to think about disabled people in the planning process are loosing out on custom.  Disabled people will be one of the first groups to use a new out of town retail park or shopping centre if town centre shops do not think of them.  Not only is if often easier to park closer to the store in a retail park, the shops are often bigger and easier to walk around.

I am surprised that some of these things are still an issue when you consider that they not only effect disabled people, but sometimes the elderly and parents with buggies.  That is a lot of custom public transport, shops and town centres are missing out on.