An Open Forum for Disibility and Invisibe Illness Awareness

My name is Paul, I am 56 and I am deaf. I haven’t always been; I was born without any hearing in my left ear – which is, to all intents and purposes, a cosmetic attachment. It served no function other than allowing the opposition prop to get a grip when I played. The right one was working fine though, until one fateful day in January 2008.

I went to bed after a stressful and busy week, supervising an office move. I had a headache and a bit of a “buzz” in my head, but took some paracetamol and retired. I awoke next morning without the headache, and thinking how blissfully quiet Splott was on a weekday morning.

For the uninitiated, Splott (or the People’s Republic, as it is known in Labour Movement circles in South Wales) is inner city Cardiff. Shirley Bassey was born here. Forget that bollocks about Tiger Bay – she was born in Splott. It just sounded better probably!
Anyway, I awoke and quickly realised that I couldn’t hear at all. I resisted the temptation to crap myself, though it was awfully tempting, got dressed and came downstairs. What to do? I live alone. My daughters’ are grown up and their mother and I, whilst still very good friends, are separated. She lives the other side of Cardiff.

I know, I thought, I’ll ‘phone . . .  no wait, can’t do that! I ended up walking to the GP with a pencil and pad, and spent a fun few minutes “communicating” that way. To cut a long story short, I eventually was diagnosed as having a viral infection, which was by now untreatable and the damage done irreversible.

There you have it. After numerous tests, visits to audiology, a session of having a mould taken of my right ear for an earpiece, and assorted consultants, I now have a hearing aid. Problem solved . . .

Only it isn’t, because I still can’t hear. I hear noise, not detail. I can hear you speak; I just don’t usually understand what you are saying. I have to work at it. I really REALLY have to concentrate, and I find that physically tiring. Worse, I have to explain and pretend to be amused at the jokes; tolerate the bored looks when I ask for repetition; and all this whilst suffering from severe tinnitus as well. I didn’t mention that, did I? Sorry – I do that a lot too; apologise. I have to apologise for being disabled.

Society seems to like “absolutes”. They would like me to be completely deaf apparently. Unable to hear anything at all. Anything less and I am not trying hard enough. But few disabled people satisfy that criteria. Most visually impaired can see something, albeit relatively useless for the main purpose of sight. Many of the mobility impaired can move, but not well enough to walk.

Similarly, I get people tell me of their “League Status” of disability, if they had a choice!! “Oh, you’re deaf? Still, not as bad as being [delete applicable] blind/ crippled/ mentally ill/ a Tory, etc.” – no, I made that last one up. Thank God I am not a Tory. I really would have to end it all then. My response; come here – I have two knitting needles and I’ll accommodate you “pal”.

I am luckier than most, I know that. I endure no pain as a result of my disability (well, not physical!) and I know of many people who do, including someone who is becoming increasingly special to me. Whilst the comments and the attitudes can be hurtful, I am better able to deal with them than many.

I am 6 ft tall and 17 stone, confident, loud and after 40 years in the world of work – much of which has been involved with Trades Unions – I can handle an argument! Rumour has it, I even start a few!

My employers, in the main, have been good. My family have been brilliant, as have many work colleagues and friends. However, I have also had a large degree of insensitivity, some abuse and a complete lack of support from a major Trade Union that I was formerly very active in for many years. I hasten to add, not my current one.

My life has changed. I grew up in 1970’s/80’s and loved the music of the time. I was at live gigs most weeks, often 2 or 3 a week. I did the Festivals and accumulated an impressive vinyl/ cassette/ cd collection. It’s all gathering dust now. I haven’t had the heart to sell it, which I should do, because it feels like I would be selling my youth? Yes, I know – sentimental claptrap.

I have had to change my job. I have had to change my ways too. I have to be a lot more patient, less aggressive and more focused, and that is hard for me. I grew up in the hearing world. BSL (sign language) is no use to me. All my friends are hearing. Lip reading is limited too. At 56, my eyesight isn’t that wonderful either, and some of you still insist on looking away or putting your hands in front of your face, or something.

Anyway, this could be the first instalment or the last. It depends on feedback. I have some personal insight into disability in society, into induction loops and a whole host of things, I may be deaf, but I am still a gobby bastard with opinions. Thank you for listening, and please be grateful that you can…


I am autistic. I have known this since I was 20 when I was tested for Dyslexia and Dyspraxia while I was at University. I also am Dyslexic and Dyspraxic but I have all three marginally. This is how I was ‘undiscovered’ for so long.

I haven’t told many people, the only people that know is the Doctor and medical team that tested me and a few very close friends. I haven’t even told my family.

I’m not ashamed of my autism but I am scared that people will treat me differently. The people I have told have shrugged it off with a comment such as “I always knew you were special.” Always the same joke but then the seriousness of “I didn’t know” or “I’m sorry”. Of course they didn’t know, I didn’t always know! But I do hide it and cope well in order to hide it. However, I don’t know why they are sorry as I’m not. It hasn’t changed my life, just given more clarity to it.

I’ve always been independent, segregated, for want of a better word, from ‘society’ because I like it like that and I struggle to cope in many social situations. I often find myself confused which leads to frustration as I don’t know why I am confused and then I get upset. Not visibly so, but I often cry when I’m alone because I can’t cope.

I have friends, lots of them, but I only have two friends I can rely on and have seen me hit the bottom and have helped me back up. These two I have had before I found out.

I’ve never had, what one would call, a relationship. I’ve never had a girlfriend. I’ve had sexual encounters but because I haven’t been able to relate to the other person the experiences have been unsatisfactory, almost worthless. However, I’m not actively looking for a girlfriend as I’m desperately trying to navigate the relationships I already have.

Autism, at times, can be lonely other times it doesn’t affect how I operate. However I would not want not to be autistic because then I wouldn’t be me. Twitter helps overcome the social awkwardness as I am dealing in the written language and no one has to see me and I don’t have to see them either. I don’t consider myself disabled, but I do have difficulties and Twitter helps overcome them. Twitter is a lifeline to anyone regardless of ability because sometimes only strangers can comfort because they don’t come with preconceptions. Some judge, but the majority don’t.

You have heard my story of how autism affects me and how Twitter helps. What’s your story?

Today I deathwalked a longer distance than I’ve been able to manage in 12 months. To say I was jubilant when I arrived home is understating the case, ecstacy would be closer to the truth after a year of injury after injury, hideous Oxycontin withdrawal and many other setbacks, just to get back to a distance I could acheive without as much difficulty 18 months ago is incredible. 
I’ve only been home half an hour and that sense of excitement has been whipped from underneath me by a phone call from wheelchair services. I’ve written about this dilemma in the past, the rules governing wheelchair provision on the NHS are so surreal Dali would have shaken his head in bewilderment and wandered off to find something not in the ‘too hard to think about’ box. 
My Occupational Therapist at the Wheelchair Centre is a lovely lady and excellent OT. She’s known me since I was in nappies and is very saddened by the situation I’m facing, but her hands are tied by the national rules governing wheelchair provision.
The rules state that no-one will be supplied a power chair on the NHS which is capable of being used outdoors until they have used a powerchair indoors for a minimum of six months. A rule, which might just possibly seem sensible in abstract to politicians with no understanding of disability or it’s reluctance to be shoehorned into bureaucratic boxes but not to anyone else, particularly not the people falling outside of those boxes and missing out on vital services and equipment.
Living in a very small one bedroom flat with standard sized doorways I could maybe just about get a power wheelchair into my home, but it would only be possible because I’m physically so petite. Given that Ehlers Danlos Syndrome affects the entire body, the demands of getting into and out of a powerchair everytime I needed to move to another part of the flat would be equal to, if not worse than the demands of staggering around the flat, I’d just be trading one set of dislocations for another, equally painful and degenerative set.  The additional downside of using a wheelchair indoors would of course be a further, rapid deterioration in my overall condition, leading to more dislocations, more pain and more disability. Remaining a part time wheelchair user is optimum for my physical and mental health, the overall cost to the NHS and the benefits bill, but does not fit within the rules of the system.
 I have an attendant wheelchair, the kind that can only be used if you have someone to push you. It’s great, but means I can’t go anywhere to use it unless I can find someone who’s not busy and is both willing and able to push me around.
It’s also difficult socially as typically people walk or wheel side by side, and being in an attendant chair prevents that. I suspect it’s one reason why small children get so fractious in pushchairs, being unable to see or properly speak to the person pushing you is conducive only to tantrums.
I am not entitled to a standard manual wheelchair as the system recognises that it would be dangerous for me to use one. I could attempt to persuade my GP to risk his professional reputation and a future negligence action by getting him to sign me as fit to use a self propelled wheelchair, but he should no more be put in that position than I should be put in the position of having to lie and say I would use a wheelchair full time indoors. If my GP were willing to claim that I’m capable of using a wheelchair I’m very obviously not, then I could obtain an NHS voucher and purchase a power assisted lightweight wheelchair myself, making up the rest of the cost out of my benefits. That is unlikely to happen, partly because my GP wouldn’t deem me fit to use a self propel wheelchair and partly because the kind of lightweight, power assisted wheelchair I would need would be cost prohibitive.
It is possible to use High Rate Mobility Allowance to purchase a powered wheelchair…but not if you’re already using that HRM to fund a car. I am currently not using my HRM for either, it goes into general living/travel expenses as I already had a car, but as I need to change my car to a more accessible vehicle, assuming there are no problems with my DLA reapplication the HRM will be committed fully to a vehicle leaving no money for a wheelchair. 
So, once again I’m back at square one. There is absolutely no doubt that an appropriate wheelchair would make it more likely for me to obtain paid work. Access to work is the scheme set up to provide specialist equipment to disabled people to enable them to work. Unfortunately one needs an actual job, or concrete job offer to use access to work, and I have neither. The 8 hours a week I’ll be doing from my sofa on a voluntary basis absolutely won’t count. 
I have three options. One; the situation remains as it is now, hopefully improved if BendyBus ever gets it’s act together enough to leave the care of mechanics. Two; I lie. To my GP, to my consultants, to the wheelchair centre and claim I will use a power wheelchair full time indoors for six months so that they eventually consider me for a powerchair which works both outdoors and indoors. Three; I try to navigate the maze of charities and beg for funding, unlikely to be secured as EDS is not important enough a condition to have rich and powerful charitable representation. 
The years of not being diagnosed and accused of being a liar have left me with a stubborn determination to cling to the truth at all costs. I am just not willing to put myself in a position where I have to lie to the clinicians caring for me, even if that lie weren’t completely detrimental to all concerned. I don’t have the energy or the mental strength I’d need to go cap in hand to a round of charities, which leaves option one as the only choice.
More than three years on…I’m still missing out.

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