The trouble with wheelies!

Okay, the title may imply that I have some issues with people in wheelchairs . . . this is not true (in fact, one of my bestfriends is in a wheelchair and I tell you now, she is uber RAD). I do, however, take issue with the media’s portrayal of disability as an inherently “wheelchair” condition, as well as the idea that “disabled” people are inherently unhappy with their position in life. I have decided to talk about this because of two particular moments in tele land that left me gobsmacked.

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Firstly – Cherry Healey, BBC’s self-styled, life documenter extraordinaire, currently has a show on BBC 3 entitled “How To Get A Life . . .” One of these particular doco’s caught my interest because it was subtitled “How Prejudiced Are We?” and would be looking at physical disability as one of the those prejudices. I settled down to watch and was, at first, impressed by the array of diversity that Cherry was exploring. And then it came to the prejudice of disability. Cherry had decided to interview a young woman who had only acquired her disability in the past few years. This woman’s life, pre-disability, was portrayed as lively, happy, very sexual (she had been a stripper), and “fulfilled.” Cherry, then went on to describe this woman’s attitude to her “new” disability as refreshing – as “getting on with her life.” The impression I got of the woman was that she was bitter, sad at what she had “lost,” and to entrenched in her own stereotypical prejudices about disability that she couldn’t really embrace this new aspect of life that she had. In my opinion, this woman was not getting on with her life, in fact, I feel that she was very much stuck in the past. Her obsession with her sexuality as a disabled woman put me on edge (sexuality is just one part of the human experience, to narrow life to just this aspect means one misses out on so much). The woman now earned her living by doing “wheelchair porn.” “Wheelchair porn.” This woman had reduced her disability to simple sexual aesthetics – she was seeing her value as a person based on her sexual appeal and for her, this appeal could only now be explored within the context of disability. This seems sort of self pitying to me. What do you think?

Now, I understand, this woman has had a shock! To go from an able-bodied life to one with impairment would be such a huge change, one that would take long to adjust to (for most). I come from a perspective that my impairment is completely and utterly normal – as I say all the time, I have no idea what it’s like to have two arms and two legs; to have to wear a prosthetic is completely rational for me, like having to wear clothes out in public. But I know people who had acquired their impairments without questioning their ability to appear sexually attractive to other people – whether these other people are able-bodied or disabled. I find that, in some ways, this woman was chosen to appear on the program because she fed into a stereotype – once able bodied, recently disabled, once sexually confident, now overtly sexual to “overcome” apparent deficiencies, and most visually disabled, in her wheelchair.

Here is my message to Cherry – please, please, please, expand your “prejudice” repertoire, you will never break through stereotypes if you continue to portray disability as something to be pitied (in this case because of a crisis of sex). Why not also address the imbalance on the media portrayal of disability as being a “wheelchair.” There are many people out there with disabilities in such a wide variety, with so many stories to tell – I believe you will address prejudice more successfully if you approached it from a new angle. Go broad Cherry, be game, be discerning in who you choose to address certain issues with, and most importantly, be true to those with disability – not everyone experiences their impairment as this, frankly, stereotyped woman does!

. . . .

Now, onto the other matter of dismal disability portrayal in the media. The other night I was sitting, innocently, watching tele when an ad popped up for insurance . . . I think (I was to amazed by what I saw in the ad to really take much notice of what they were actually selling). The ad came on and out popped a man in a wheelchair – so what?? you may ask. What bothered me was that the man was also wearing a prosthetic leg!!! Um, doesn’t the wheelchair and prosthetic cancel each other out, make the other redundant, seem completely illogical together???? As a prosthetic user I do not require a wheelchair (I do use a “glider chair” at home, but that is for when I want a day out of my prosthetic, I don’t use them mutually). It almost seemed as though having a man wearing a prosthetic leg wasn’t “disabled” enough for the ad, so they had to chuck him in a wheelchair as well. What is your take on this?

p.s. if I find out what the ad was for I will let you know.

I wish that Iain Duncan Smith would “lose a limb!!”

No-one really knows what it’s like for a disabled person. No-ONE! Only that disabled person knows what it’s like to navigate this able-bodied world for them, with their particular impairment. SO imagine my shock when I read this article (don’t hit me – I know it’s from a trashy news site, but sometimes I do find myself liking trash, woe is me). Is Iain Duncan Smith serious?? Apparently HE knows what it’s like to be without a limb. Apparently, HE knows that if you lose a limb you can still work (and this is the crunch – yes, you probably could still work, but not every job would be open to you; your choice in jobs would be diminished, AND you have the added aspect of dealing with disability discrimination, because frankly, disability discrimination is out there people, no matter how much you want to deny it!!). But whether you can work or not is not the issue here . . . read on . . .

Iain Duncan Smith is an idiot. Don’t know who Iain Duncan Smith is? Check out this little link – ahem-tosser-ahem. Yes, he is the “caring” man who is the Secretary for Work and Pensions for that devilish of all devilish parties – the Tories. I personally think he has a screw loose . . . for only a person with a screw loose would hold the opinion that people are “festering” on DLA (Disability Living Allowance . . . the best thing since sliced bread . . . for disabled people). DLA is not like other disability benefits where it is judged on your ability to work. Nope. DLA is a support there to help people with various disabilities live there lives . . . even work (yes, it even helps disabled people get out of their flats and work, WORK . . . did you hear that Iain Duncan Smith – WORK!!!!). To threaten to take away this support from over half a million people is effectively going to take away the means for these people to work. Effectively, they will “fester,” because their means of living will be gone. Um, doesn’t that sound a little like hypocrisy? Iain, a word of advice, you want disabled people to get off employment and support, then don’t take away their means of doing this, don’t take away their funding that helps them get to work, buy tools to help them work, and generally get the everyday help they need to function.

This perpetual attack against the disabled is sickening, and still these politicians (who I am convinced, ever more daily, know nothing about the real world, and frankly don’t want to know) make assumptions about the people they are supposed to support and help. Iain Duncan Smith you disgust me – seriously, I wish you would lose a limb, and then maybe you would be able to show a little compassion and empathy instead of cruel, wanton ignorance.

 

 

Traveling Dixie (or disability travel)

Last week I went to Paris. For 48 hours. YES a whirlwind trip, but a trip with a disability all the same.

The point of this post? Just because I have a disability doesn’t mean I can live my life to full enjoyment, adventure and fun. People think that if you have a disability perhaps you can’t do as much as the able bodied person . . . this is true, to a certain extent. It’s not so much that having a disability precludes me from activities, it’s that allowance and adaption may have to be made to give me the ability to do this activity. It’s not a big deal. Nope. Just put me in that space, let my attitude blossom, help me when I ask for help.

Now, Paris, in 48 hours. That was tough. Paris, in itself is not designed for a fleeting visit. Add a prosthetic leg on top of that and out the back end of the trip pops an exhausted, achy, shin-splinty, slightly dehydrated 30-something woman with happy memories, adventure excitement, and the desire to go back and do it again (though perhaps with more time next time). What else pops out is a new experience of exploitation of my disability be the various gypsy gangs that pound the Paris pavement. I guess it can kind of be expected . . . the perceived weakest of society can become fair game for those that are dumb enough to think of me as weak. I am not weak. In fact I believe myself to be fairly intelligent with a smattering of street smartness. Those gypsy’s could not fool me; in fact they were the fools. This “threat” did not deter me from Paris. Or travel. 

I can travel (just a little differently), I am intelligent, I am missing limbs, but most of all I am all attitude when it comes to living my life to the full. No one or nothing can stop me.

(How awesome is this photo of me in front of the Louvre!! Taken by my very talented friend and flatmate Jessica)

When the truth hurts (or when Atos can’t deal).

In my flat at the moment there is an ongoing discussion and feeling of outrage at the way that Atos implements it’s “fit-for-work” assessment process. This has been bought up before in this blog and is something that will only be touched upon here, in this post. You see, the point of this post is to express my horror at the denial of human rights and free speech that Atos is implementing in it’s assessment process. Basically, Atos cannot take criticism, it cannot handle any sort of “bad publicity,” because it knows that to maintain some kind of authority in it’s approach to assessing disability and illness it has to make the process seem “a-okay” on the surface. But everything is not “a-okay,” not when the people that it assesses begin to speak out and question Atos’s processes and the staff implementing these processes.

(I know that not every person who works for Atos is at fault here, but they do work within a company that comes across as morally corrupt on all levels and therefore, unfortunately, will get caught in the blame-game).

What has bought on this new fit of “rage against the machine”? (the machine being Atos of course). Well, check out this video here which exposes the secrecy, the sneakiness, and the debasement of disabled people and carers by Atos.

In the very first sentence of the U.N.’s Universal Declaration of Human Rights preamble it is stated – “Whereas recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world.” Can I draw your eyes where it says “inherent dignity,” I can tell you, there is no “inherent dignity” (there is no dignity at all) in the process that is meant to help people in difficult times or who need the support and care of others to live a dignified life.

May I also draw your eyes to the words – “foundation of freedom.” Perhaps, in the context of the above video, this is the more important idea to focus upon in this blog post. According the the United Nations Declaration of Human Rights, article 19, “Everyone has the right to freedom of opinion and expression; this right includes freedom to hold opinions without interference and to seek, receive and impart information and ideas through any media and regardless of frontiers.” As someone who is exposed to the processes of assessment via Atos, I believe that it is your right to hold an opinion on the process and to show an intellectual interest in the reasoning behind the assessment, to make in informed decision about Atos and then to disseminate your opinion in such a way that is informative and useful to others. Yet, it is Atos that is denying this basic human right for people who are already vulnerable. Vulnerability, in this case, means being an “easy target,” and disabled and ill people have become an “easy target” (for both Atos and the Government).

If a disabled person has a bad experience with their Atos assessment, why cannot Atos let them tell their story, why cannot Atos let people have their opinions. Why is Atos’s only response to such opinions is to shut the website/forum/person down, instead of defending themselves. Can they even defend themselves? Or are they far to corrupt to consider being transparent and open in their workings.

As a society in melt down, where the financial speculation from banks has proven the downfall of the western world, we now require such businesses to be open in all their transactions. We can rebuke them and know that we will not be threatened by our actions. Atos, take a hard earned lesson from these banks, be open, listen, don’t threaten the already vulnerable with legal action for purely have a bad experience with you. It is not the disabled/ill persons “fault” that they are intelligent enough to hold an informed opinion about your organisation. Stop being a bully, pull your head in, treat people with the respect and dignity that they deserve, and perhaps, most importantly, grow a set of balls and own up to your mistakes.

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On contemplation . . .

I have had a very interesting Easter weekend. I am not a regular churchgoer, in fact, I am a regular questioner of all thing religious and churchy. Being of a curious mind, I read, study, and ponder many things on spirituality – I do consider myself a spiritual person; I will claim that I am agnostic (though, just to confuse the matter, I was christened Presbyterian). This Easter sunday just gone, however, I attended church. Catholic Mass to be exact. Why you may ask? I claim to be an agnostic, yet attended a church service for the most important date in the Christian calender. Well, as I said, I am of a curious mind and therefore wished to satisfy this curiosity and gain some new knowledge in the process.

Now, you may be wondering, what does this have to do with disability?

When I was a child I did have an unwavering belief in God. We, as a family, would never go to church except for weddings, christenings and funerals, and my only scripture lessons were in school, but I did believe in a God that had a purpose for my life. I remember once saying that because I was born without most of my limbs, God had given me other talents that made up for this. Talents that seemed incongruous to my disability. Talents such as being able to read piano sheet music and playing the piano, talent to knit, talent to draw, talent to float and swim well. I thanked God for these talents, but even then I felt that it was a bargain made with God, just to make up for my other deficiencies. That was when I believed God as this big man, up in the sky looking down on me, determining my fate.

As I grew up and became more aware of myself, of the world, of knowledge itself, I started to question this idea of God. I was accepting of my disability, regardless of whether God had given me talents to make up for it. I had my talents because I wanted to have these talents and I was willing to give anything a go. I dabbled in other spiritual paths; I had an interest in my Pagan roots (having a family history firmly rooted in Celtic lands), I pursued Buddhism and Zen, talked to Muslim friends about Islam, and read up Judaism. I learnt much from all.

What was my biggest point of discovery?

All of these spiritual practices, (including Christianity), when boiled down to the basic tenants of each faith, were contemplative traditions, with a focus on knowing oneself and being true to oneself, and in being this self aware, knowing how to morally and ethically be in the world. Well, imagine my surprise when I realised I have been a practising Christian, Muslim, Buddhist, Jew, and Pagan all this time.

You see, having been born with a disability I have had to become extremely self aware from an early age. I have had to accept that I am different to my able bodied peers and become very okay with that from the time I started school. I could not change my body, like others can diet and exercise to change their bodies to “fit in” more. My body was my body is my body; and I wouldn’t change it even if I could. Why? Because my body has given me the chance to be apart from the social norm, given me a chance to contemplate what is most important in life, to know myself in such a way that my moral and ethical code is one of love, acceptance, peace, and hope (perhaps I don’t always show these qualities, but we are not infallible creatures). In this sense, my disability has been a blessing, and I am sure that many other peoples with disabilities would feel the same.

At the Easter Mass I attended on Easter sunday I had an epiphany, of sorts, as the Priest spoke to the congregation – The truth (for me) of any God, spiritual power, or universal energy, is to heal the self, heal the soul from suffering, to use contemplative practice to bring yourself out of misery and into acceptance of who you are. Through this practice you can become a more loving, kind, caring person. I accepted that I am missing limbs and that I can’t do everything, but do I really want to do everything? Nope, what I want to do, regardless of any religious affiliation, race, or sexuality, is accept people for who they are, for their experiences, and to show them that the best path to a peaceful mind is for them to accept others for who they are. We are all ourselves and nothing can change that; and yet, we can still all care for another without conditions or requirements.

I think I still consider myself agnostic, but that does not mean that I did not have a lesson to learn this Easter weekend. Did you learn anything spiritually engaging over Easter?

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The Proof is in the Pudding . . . so to speak!

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The past few weeks have been a rollercoaster, culminating in a doctors appointment yesterday that I attended. The appointment wasn’t for me, oh no, it was for my friend who has recently had a benefit cut because apparently her condition is mild and therefore she is not disabled. I was astounded by the report that she got back detailing the results of her assessment. There was outright fabrication of the facts, ignorance of my friend’s condition, and total discrepancy between my friend’s benefit questionnaire (detailing her day to day life) and what the HCP (Health Care Professional*) “guessed” as to how the condition affected my friend’s life. So, with my friend appealing, she has had to gain a “sick note” from the Doctors to cover the period of appeal. Guess what? The doctor was completely behind her and related that my friend was one of many getting rejected for many benefits, people with genuine conditions, who were now turning up to the medical centre, depressed, stressed, and anxious, begging for help.

Can anyone see the problem here? The complete waste of money and time? And the creation of further distress on ill and disabled people?

My friend, who I have known for many years, and in those years have become apprised to the way that her chronic condition effects her everyday life, has to now go through a lengthy and expensive (for the government) appeal (how does that eat at you?). You see, my friend is no slacker, no scrounger, no deadbeat. BUT my friend does have a chronic condition (of which I have referred to in this blog before . . . if you want to know more you will have to go read the rest of my blog), and this condition can disabled my friend more than my own -more visible – disability can.

The doctor knew about my friend’s condition, knew the medications that she was on, knew the effects of the condition and medication and how that could impact on everyday life. The doctor knew. The HCP had never heard of my friend’s condition, had never heard of her medications, and obviously had no idea what impact these would have on my friend’s life. The HCP didn’t know. Therefore, who seems more qualified for deciding who should be able to get benefits? I believe that I have mentioned before that I have had experience of the benefits system both here in the UK and in Australia (don’t get me wrong, I don’t bounce from country to country to live off benefits, I have had paying jobs before, but it’s about recognising that you can’t do anything or everything all of the time and that you do need extra help) and my opinion is that it is a smoother, more humane assessment system in Australia.

Just because you have a disability or illness doesn’t mean you shouldn’t be treated without respect or compassion. Yeah, sure, there are fraudulent people out there milking the system, but I maintain that they will always be found out eventually; you can’t fake disability and/or illness for a sustained period of time. It is those that commit fraud that throw suspicion on the genuine people, and it is the genuinely disabled and ill people who are now being punished. That doesn’t seem fair, does it?

(*A health care professional that isn’t . . . apparently only 5 days training means you can get that title of HCP . . . obviously they don’t learn much in those 5 days, about medical conditions or compassion)

It’s alright to be dismissive of disability, until it happens to you . . . apparently!

Having been limb deficient since birth, I was raised to recognise my limitations, but to “get on with it,” to be independent, to achieve what I want to achieve, basically to live my life as best that I could. The same could be said for many thousands of other disabled folk whose lives have been lived as independently as possible. In fact, I imagine that for Tanni Grey-Thompson it is exactly the way that she lives her life – as independent as possible – and yet, when she talks about her experience of trying to be independent (with the assistance that is required for her to live independently), she is rubbished by ignorant (twats?) people on the Daily Mail (why oh why do I expose myself to the unintelligent, crappy, tabloid “stuff” that is the Daily Mail).

What people don’t seem to get, in this growing age of disability hate, is that to live independently as a person with a disability is to have the support and assistance to live an independent life. I could not live independently without the financial and practical support that I get from the government, doctors, occupational therapists and prosthetists. In fact, without this assistance and support I would be stuck at home (in Australia), indoors (because I would not have a prosthetic to give me mobility), or institutionalised (where my life would be reduced to my disability; I would be nothing). People may think that disabled peoples demands for equal and human rights is to be met by the exact same treatment as able bodied folk (and it is, to an extent, the acknowledgement that disabled people are people first and foremost that is important), but these people should also understand that disability means limitation in physical action, and therefore, assistance and support is needed to attain and maintain independence and equality.

People denigrate the disabled, look down on them, see them as a burden on society . . . that is until they are hit by disability themselves. What people seem to forget is that border of the land of disability is constantly shifting. Disability always is and always will be “there.” You cannot escape it and anyone can pass through the borders of disability at anytime.

(image via Filigreed)

My message then . . . don’t denigrate, don’t assume, don’t hate; it could be you on this side of the line before you know it. I don’t want to make it a scary thing . . . disability is not scary, but it is a fact of life that can effect anyone, regardless of gender, race, and sexuality. Disability is the one “difference” that can affect all.

The one where you meet a similar soul.

As I am sure that I have mentioned on this blog before, I am a motivational/inspirational speaker and I like to get the word out there that disability is just purely another way of experiencing life. I am very passionate about getting across issues to do with inclusion and acceptance, whether that be in schools, businesses, or the general community. I love it, though, when I meet others with the same passion, the same drive to awaken the community to the potential of individuals with disabilities. Because, really, when you think about it, without certain individuals who were born with or developed disabilities we wouldn’t have some amazing cultural and scientific knowledge in the world today (i.e. black hole theory, classical music, etc).

I attended a meeting yesterday with the PSA North East Branch (Professional Speaking Association), and at this meeting there was a “woah, wait up, is this meant to happen, am I meant to meet you for a reason?” moment. This was with a gentleman named Steve. Now, you see, Steve and I are very similar (except in the most obvious way of course) – we both have a disability from birth, we are both members of the PSA, AND, most importantly, we are both very driven and passionate about addressing disability in the community and “normalising” it to the point where disability, as a label, is no longer needed. I get very excited when this happens, when you meet a like-minded soul. For me, Steve means possibility, collaboration, and a warrior assault on the very society that likes to put people like us in a box. So look out world, through school domination and society sway, Steve and I (and many others out there) will question your modes of thought on disability and change your minds about the very meaning of disability in the world today.

(image courtesy of Rutil)

Knock me over with a feather (no, really, I think you could knock me over with a feather).

So what do I do in the mornings when I have just woken up and am trying to adjust my eyes to the bright sunlight shining in my window? I open my laptop and take a gander at the latest headlines on the Guardian. (I make no apologies for reading leftist papers and being a little leftist myself). And what did I come across this morning? The miraculous event of an article talking about the failings of the Employment and Support Benefit system on the front page, near the top, where everyone could see it!! To say I was beyond excited is an understatement. As a disabled person I feel that the voice of the disabled is not getting enough attention, compared to that of other minorities, and that the Guardian has taken a huge step forward in placing such an article in a prominent position. Here is the article if you would like to read it – “Sickness Benefit: ‘They try their damnedest to avoid paying.'”

 

Interruption Alert!!!!! Anger Mode Activated!!!!

 

Sorry for the interruption in proceedings, but I have just become aware of a friend who this morning is having to deal with the incompetence cited in the above article. My friend has a type of inflammatory arthritis that is fluctuating in nature and is now affecting more joints then ever before, she also suffers from depression, and has recently been diagnosed with a chronic lung condition. Because of her ill health she suffers from constant fatigue and often struggles to get up in the mornings because of insomnia caused by extreme pain in her joints. Now this morning (which just so happened to be a fairly okay morning for her) she received a “courtesy” call (to taunt the disabled) to ask her to “clarify” her  conditions, as the man who called was trying to come to a decision on her Employment and Support claim. Unfortunately, it sounded like he had already made his decision and was just (taking some ego-trip) making the call to confirm aspects of the form. This has upset my friend greatly. Her fairly okay day, where she was up, dressed (a rare event), and in a calm mood has been destroyed. Her anger (and mine) at the incompetence of ATOS and DWP folk at determining who is fit to work is boiling over. Who are these people, who have no medical training and no understanding of what being disabled is like, to make decisions that will effect many vulnerable peoples lives?

 

Now, my friend is very intelligent, she has multiple degrees and skills that she would love to put to use and earn her way through life. But unfortunately she is not currently in a position to do this healthwise. All she is asking is for a little support to get her through the tough times, but apparently this is too much. Her experience reflects many in the UK at the moment. Should we sit here and let this stand? I think not. Fellow disabled people, start voicing your experiences, your stories, your concerns, don’t let the evil overlords win. We deserve a life, we deserve respect, we deserve a chance, lets let people know this.

I quite often forget that I am “disabled.”

Like I have this week . . . yep, it completely slipped my mine that I am “disabled.” But you see, this happens often, this forgetfulness, this slip away of social circumstances. I don’t forget that I am my self, my body, as is, that I do things differently to others (but perfectly natural for myself), that I am my own mind and thoughts and actions. All without the tenacious thought of “disability” darting through the ever flickering neurons.

I often get asked what’s it like to be disabled? I don’t know. What is it like to be able-bodied?

I like that I forget that I am “disabled.” I try not to use it as an excuse for anything (though sometimes my limb deficiency can cause me fatigue and pain which can make things more of an effort). But I don’t see my limb deficiency as being a negative thing . . . as disability is seen as a negative thing. (Though I don’t like to say disability is a negative thing, as it is simply another way of experiencing life from a different perspective).

What is your experience of disability? Do you see your self as disabled? (Notice – your self, as opposed to yourself). If you would like to share your story, comment on this post.

(image via alinopaneevino)