As the authors of ‘Wheelchair Dancer ‘and ‘Screw Bronze!’ will attest, I am never one to shy away from asking uncomfortable questions and mooting controversial ideas. I’m analytical by nature and never knowingly swallow any line I’m fed without extensive deconstruction and investigation of the facts.
Today is Blogging Against Disablism Day and to me there is no better day to ask a very serious and possibly controversial question that affects disabled people and our culture.
Is it time to exclude the able bodied from our culture and the decisions making processes that affect us?
About two years ago I was a asked to meeting with a member of the local council and a local disability rights group to discuss some artwork with the theme of inclusiveness which would adorn boards in my local seaside town which would mask various areas whilst building work was taking place. I was studying art at this point and my perspective as an artist and a disabled person was a unique one and potentially helpful.
We discussed what the council envisaged going up on these boards and what the representative from the disability rights group would like to convey and the meeting was quite productive. However, whilst discussing the project with members of the disabled people’s group I was left deeply frustrated.
I suggested that because the theme of this work was inclusiveness that able-bodied people from the wider community should be invited into the discussion. This was shot down immediately by a very vocal member of the disabled group. I was stunned – what sense did it make to form a group supposedly aimed at fostering better understanding and equality between disabled and able-bodied people whilst excluding the very people we need to have a dialogue with in order to achieve that?
Two years later when I witness the brutal assaults on our lives being implemented by a government headed by a man who has been the parent of a disabled child, coupled with a rise in disability hate crimes and the horrifyingly ignorant attitudes of many able-bodied people to disabled people and our rights, I begin understand exactly why exclusion may be desirable.
The thing I find most problematic about able bodied people having so much power over the decisions that affect our lives is the parameters they use to judge ‘success’. In my own personal experience, groups run by able-bodied people charged with improving the lives of disabled people (including Disability Employment Advisers in what is now called the Department of Work and Pensions) have without exception defined a positive outcome as one where the disabled person operates within an able-bodied context.
Nowhere is this narrow definition of ‘success’ more dangerous than in the world of work. The new work capability test can see the financial support a person needs withdrawn based on that person’s ability hold a pen. Never mind that you can’t actually write with that pen or – like me – you can hold a pen and can write when not under pressure, but relied solely on a digital voice recorder for three years during lectures because you find it impossible to simultaneously comprehend the speaker and take written notes.
I’m trying really hard to find any information about real disabled individuals being consulted before the decimation of our welfare system commenced but I can only find a list of larger groups who responded to consultation requests for the report ‘21st Century Welfare’. I’m damn sure nobody bothered to ask me what I thought! I suspect a lot of people reading this blog had the same experience. So, again we have able-bodied people telling us what we want, what we need and forging ahead without even bothering to check that they’ve got it right.
I mourned the loss of the Disability Rights Commission when it was swallowed up into the utterly useless romantic fantasy that is the Equalities and Human Rights Commission which seeks to serve all minority groups.
Sir Bert Massie is a bit of a hero for me and the DRC was truly user-led. Disabled people speaking for ourselves and leading the way in taking charge of OUR OWN civil rights. The EHRC will never adequately serve the needs of any group it claims to represent for one simple reason – one size does NOT fit all and their remit is just too wide. For example, whilst I can have empathy with other wheelchair users, I am NOT qualified to speak on behalf of those with hearing or visual impairments, neither am I equipped as a white woman to understand or have an opinion on the unique requirements of people from ethnic minorities. Try downloading a few of the Equality Act guidance leaflets for service users (available in WORD and PDF format) and you’ll see that these documents only touch briefly on the rights and responsibilities of each group the EHRC represents. This is just not good enough.
If I approach a civil rights organisation about a suffering discrimination as a disabled person I want to know that the person dealing with my case is fully cognisant of the nuances of my life as a disabled person and the only way that will ever happen is if my ‘go to’ person is disabled themselves. With the best will in the world, and having dealt with a LOT of able bodied people given the task of catering for the welfare of disabled people I can state categorically they just don’t get it and they can’t be expected to. No matter how may awareness courses they go on, or how many degrees they have in disability culture. THEY WILL NOT GET IT BECAUSE THEY DON’T LIVE IT. Not even my own parents would have the audacity to suggest that they know what I deal with daily, despite having known and lived with me for 38 years.
So, what’s the solution?
- We need to start by coming together and forming groups like the DRC off our own backs. Just because the DRC is gone, it doesn’t mean the people who supported and passionately drove the organization have disappeared. We need to re-connect with those individuals and dictate the course of disabled people’s rights on our own terms once more.
- Cottage Industries and Co-Operatives. Self employment is a way of working that suits a good number of disabled people – including myself – but I have nearly torn my hair out in my quest to find agencies that give tailored advice and support to disabled people wishing to start our own businesses. The law of averages says there have to be a significant number of disabled entrepreneurs out there. We need to find those people – weather they are currently running their own businesses or are simply full of great ideas but unable to find other disabled people to share them with – and form our own versions of ‘Business Link’ and similar bodies. To their credit I have to say if you go to the Business Link website and type ‘disabled’ into the search engine you’ll get some interesting and potentially useful results. However, among those links is DEN – the Disabled Entrepreneurs Network, which I have to say is abysmal. I looked at this site over a year ago and it still has too many pages which are ‘under construction’. For a body which has been running since 2001, this is bad form.
The main reasons disabled people fail to find or keep jobs are the misconceptions of able-bodied employers coupled with the refusal of a lot of companies to be flexible in order to accommodate an employee’s needs. I think the answer to this may lie in forming working co-operatives where workloads are shared and tasks are negotiated between co-op members to capitalize on the strengths of each individual person whilst helping each other negotiate physical difficulties.
- Ditch the internal politics. Too many times I have seen an ugly hierarchy develop within groups of people who are supposedly fighting the same cause. The strongest example of this I have seen is within the feminist community where women who see feminism as fighting for a woman’s right to make her own choices – even if those choices are not ones that would suit you personally – are constantly criticised and verbally attacked by extremely radical feminists who scorn women who enjoy roles traditionally associated with women like choosing not to work once they become mothers and deem any women not fitting into their own narrow idea of an ‘authentic’ feminism as ‘fun’ feminists. Whilst these internal battles are being fought, we’ve taken our eye off the bigger picture and feminism is in grave danger of stalling and going into reverse.
- Within the disabled community I’ve seen people with varying disabilities admonish others because they are not self-identifying in the way other disabled people think they should or are telling truths about their own lives that other disabled people find uncomfortable (interestingly I find this admonishment comes most vocally from those who are formerly able-bodied and have chosen denial as their coping mechanism but that’s another subject entirely). This has to stop if we as a people are going to get anywhere. I am always interested in the sense of connection and cohesion that people of different ethnic minorities and religions show and I think we could do worse than take a leaf from their book. I propose that those of us with disabilities begin viewing each other as Brothers and Sisters. When a group of people regard each other as family, it fosters a sense of cohesion that quickly turns into a mighty and impenetrable force when a member of the group is threatened.
So far I have outlined how we can come together to take charge of the decisions that affect of rather than being spoken for and organized by a larger section of society that simply is not qualified to do so, but there are many practical aspects of our struggle that mean we must engage with the able-bodied community if we are to see changes that benefit us in meaningful ways. We must also allow for a number of able bodied people who are willing to understand and assist whilst possessing the humility and intelligence to realise that they can never comprehend the full reality of our lives and so they must listen and take their cues from us. Whilst we are talking amongst ourselves, we must not forget that those of us who blog or speak in public are also addressing the able-bodied community and we need to help them understand how they can assist us, not by taking over but by listening and allowing our experience to lead their actions.
- Get serious and be professional. Disabled people protested against benefit cuts in Trafalgar Square 15th Dec 2010 (video) and the turnout was less than inspiring. I understand that many people could not be there in person due to their disability because I was one of them, but will a little more co-ordination and some clever tweeting I am convinced at lot more able-bodied people would have turned up in support. As it was this demo was just too easy to ignore and too easy for the wider public in the area on that day to regard as ‘a few crips with a bee in their bonnet, nothing serious’. We need to start polishing up our act if we are to show the world that you cannot fuck with us and expect us to meekly sit back and let it happen. To put it cynically, we need to become a brand – something that people quickly see as a force to be reckoned with instead of fragmented single-issue groups pissing in the wind with the small hope that we’ll all benefit from our individual efforts one day. Think of the LGBTQ movement, millions of people all over the world fighting for the same cause. If you Goggle ‘LGBTQ’ then click on images there are approximately 232,000 results with one iconic image in common, the Rainbow. Sure, different groups tackling specific aspects of LGBTQ rights and equality but still the same recognisable universal symbol.
Do this same exercise with ‘Disability Rights’ and something interesting happens: 4.2 MILLION results but ZERO COHESION. As an artist who was educated particularly in the skills of applying art and design to convey specific messages, this fascinates me. Despite our individual needs we can all surely agree on the message we need to send to non-disabled people and it wouldn’t be rocket science to go from that consensus to creating a brand to give our movement more power.
Wow! I’ve written more words in 2 and-a-half hours than I could write in a whole day when I had to produce essays for college. I think I’m out of gas now and in danger of losing the thread and going off at tangents so I shall stop there and turn this discussion over to you, dear reader.
UNLEASH THE KITTENS AND LETS KICK SOME ASS!!