GAAAAAAH!!!! (contains potty mouth).

Well, that was a crash course in frustration. On Tuesday I rang Motability to try and get a referral to my nearest driver assessment centre so I could be absolutely sure what I want and need from new Wheelchair Accessible Vehicle (WAV).

I was asked a few questions by the person on the other end of the phone….and promptly refused a grant for a WAV I can drive myself.  I don’t meet any of the criteria (mainly not having a job) but I can apply for one that would make me the passenger only. What the tartan fuck is the point of that!?  I’d be no better off than I am with the car I’ve got now.  The whole point of me getting the WAV is that I will have total freedom to lead my own life, and it also increases my chances of getting a job tenfold.

And really, is it too much to ask to be able to get in my car and take myself off for the day without needing to make sure there’s someone at the other end of my journey to sort out my wheelchair? Am I not allowed ONE freakin day in my own company?

Right now I am feeling utterly deflated.  All my plans for this year centred around that car and if I can’t get it…  I can’t give up. I won’t give up. But I may just need to go away and have a little cry first.

Dad and I have been batting around alternative ideas for finance.  One option is a ready-converted WAV but that would involve a Hire-Purchase agreement and wouldn’t cover things like insurance and roadside assistance which make Motability the only affordable way for me to have a car in the first place.

I’m going to name-drop here because Kerry at Holden Mobility has been awesome so far.  I’ve been emailing her today about this new curve-ball and she’s given me plenty of ideas about appealing decisions etc.

I was not offered the opportunity to be referred to the driver assessment centre, though I was offered a grant application form which I accepted.  When I received the application form, I noted that section 4 is specifically for applicants who wish to drive their WAV, which confused me somewhat as I was lead by the guy at the grants department to believe that grants are currently only available to those customers who wish to use the car as a passenger, not the driver.

**Sigh** I’m going to bang my head on the nearest wall now. I may be some time….

BADD 2011

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 ‘21^st 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!!

University, challenged.

Today I want to reflect on my time at University and weather – with the imminent roll-out of astronomical tuition fees – I would do it again or advise others to go to University.   But before we get to the main event, let me give you a little background.

From the age of 13 I was determined to go to University.  I was one of the first disabled children to attend mainstream school in the UK in the mid-80’s and it gave me a determination to ‘prove myself’ beyond high school and I wanted to go to University.  What I was trying to prove and who I was trying to prove it to is anybody’s guess – as a recipient of unconditional love from both my proud parents I didn’t exactly NEED to garner any respect or attention – but I do remember being spurred on by the sight of all my able-bodied cousins beaming down at me on their caps and gowns from my Grandparent’s mantle piece (just to be clear, these were photographs and my grandparents didn’t actually posses an industrial strength mantelpiece).

So, with that said, kindly fasten your seatbelts and be sure to keep your arms and legs inside the carpet*.  Off we go….

Fast forward 20 years and having gone straight into work from high school, then moved to another part of the country I decide that in the absence of a job (a whole other story in itself), that it was time to embark upon another course of study to stop me chewing the furniture.   I chose a Foundation Degree in Applied Art and Design because this meant I could combine my love of art, music and technology to create some interesting work.  I found a course attached to a University but based in a local college that sounded exactly right for me and enrolled.  Everything was great for a month or three until cracks in the curriculum and teaching started to show.  My first alarm bell should have gone off when the very module I wanted to explore – Lens Based Media – lost it’s one and only lecturer and she wasn’t replaced.  I was now left pretty much to my own devices to study my medium alone.  Luckily I had made friends with another student who was also concentrating on lens based media and that gave me someone I could share ideas and influences with, but it wasn’t really the same as the guidance I had received from my former tutor.  My friend was  a full time student and I was part time so in my final year I was left to explore my medium alone. This resulted in me allowing myself to be talked into changing my medium and that was the single worst mistake I made.  LESSON ONE: KNOW YOUR MIND AND STICK TO YOUR GUNS. Don’t assume that a tutor knows more than you about your medium just because they’ve got the BA/MA/Doctorate and you haven’t.

LESSON TWO: KNOW WHAT YOU’RE PAYING FOR.

The course title (‘Applied Art and Design’) had given me a certain expectation that the primary focus of this course was to build on my existing skills in a very practical sense and then teach me additional business skills I needed to make my art profitable in the real world.   However, in the second year of my course we were informed that the Business Studies element of the course would not be delivered unless we went on to study the BA ‘top up’ course.   I was not alone in being attracted to this course specifically for the business element (business studies within the context of the Art industry is different to general business studies) so my fellow students and I were understandably angry about this unexpected change to the course.  We did get a few guest lecturers who were interesting but only touched briefly on the business aspect of their practice. We did have one module centred on commissions but again business practice was not discussed in the depth which the prospectus had led me to believe it would be discussed. In short, it was not the hands-on real world experience of the artist’s JOB that the title of the course had suggested.

Now, allow me to digress slightly with a hypothetical scenario.  Say you decide to have an extension built on your house.  The builder tells you exactly what this will entail, how long the work will take and what you are paying then a few weeks into the job the builder just doesn’t turn up when you’ve agree to re-arrange your schedule to meet with them.  When you do finally manage to locate him, he cites too much work on do on other jobs as the reason he has disrespected the agreement you had in this manner.  You’d be pretty pissed off yes?  Well now you’re a student handing over £9K a year only to find that your tutors are changing module deadlines with little or no notice (sometimes on the day an essay is due to be handed in – yes this really happened!), you turn up for lectures only to be told they are cancelled and entire steps are missed from modules because a tutor has bitten off more than they could chew and was marking work from several other courses when they should have been teaching you and marking your work.  Hands up, who’s for a refund?

And all this before we’ve ever considered the way the establishment deals with disabled students.  A compulsory element of my course was to attend trips to art Galleries in London and Cardiff.  How many trips did I go on to these locations?  Not a single one.  Despite repeatedly pointing out to ‘the powers that be’ that the coaches were not accessible for my wheelchair nothing was done to rectify the situation (but a suggestion was made that I take the train at my own expense – nobody bothered to check in with me to find out I wasn’t entitled to Disabled Students Allowance!).  I managed trips to local art galleries with the help of fellow students who had cars and were willing to give me a lift.

I can actually drive but was never sure of getting a disabled parking space on Campus due to various able-bodied people taking up spaces.  Another thing I complained about (and provided photographic evidence of) on numerous occasions that nothing was done about.  When an able-bodied member of staff (a janitor) was tackled about using disabled bays this was his response (I shit you not!): ‘No worries, when she wants the space just let me know and I’ll come and move my car’.  Anybody want to join me in banging their head on the desk right now?   I think this culture of ignorance wore me down just as much as the problems with the course itself.

Life after University

The prospectus for this particular course states the following career opportunities are available post-graduation:

Self employment as an artist/ Designer/craftsperson

Gallery/museum administration

Community-based art work

Prop making for theatre, television or animation companies.

Well, I can tell you right now that I would not be confident in any of these roles other than self-employment (I’m completely self taught in my current art practices) because the guidance I received was just not sufficient to send me off into the world of work in the Art Industry. I left that course more confused and unsure of my own abilities as an artist than I was before I started and so when I heard about the plans the University I attended had to charge ‘top whack’ in fees, it sincerely worried me that future students would be wasting their money.

However, it’s not just students wasting money that bothers me. Employers also need to know that when my CV says ‘Foundation Degree in Applied Art and Design’ that they are getting somebody who knows their arse from their elbow in that particular subject!  Poor quality courses and tuition don’t just cheat the student, they cheat employers too. It’s reasonable for both parties to expect that having a degree means a person possesses a certain standard of competency in that subject.   Hiring someone who’s got it on paper but can’t actually do the job properly is bad for the employer, who has to cut them loose and bad for the former employee who is now looking for a job!

I was lucky enough to have been able to get a Local Education Authority grant (I gather these may also be scrapped) when I did my course, but had I been forced to pay for my three years at University, right now I’d be asking for my money back.  Had I been able to pay I would have had no problem with the principle, but I am very aware that this would also make me a CUSTOMER of the University and as such those paying for the services they deliver have a right to expect good value for money. People who NEED degrees to have a career like doctors have even more right to demand reasonable rates and good value for money from their Universities.

So, is University really all it’s cracked up to be?   When I sit and think about what a University education really meant for me, I can’t actually say it enriched me on a personal level, and I certainly didn’t learn anything I couldn’t teach myself (and in fact I did exactly that on more than one occasion!).   Although I did learn from looking at some of my tutors that you can spend many, many years in academia and still be as dumb as a box of bricks!

If I had that time over again, I can think of cheaper and more enriching ways to learn what I needed to know.  I’m still involved in art but in a totally different way. It’s taken me precisely 9 months to teach myself a new discipline and build up the confidence to seriously consider turning my art into a business.    My University, despite what the brochure said, failed to accomplish this in three years of study.

As I said before, there are some careers for which a degree is the ONLY way you’ll get your foot in the door so for those people I’d like to offer the following advice when choosing a University:

• Make sure what YOU expect to get out of the course is what will actually be delivered to you.  If having discussed your needs and expectations with the course manager or head of faculty you realise that it won’t meet your needs then look elsewhere – Universities are now a business. You are the customer and they are not doing you any favours so make sure you are getting value for money and if you are in any doubt of this then take your business elsewhere.  9K is a hell of a lot of money to spend (or a lot of debt to acquire) if your course isn’t going to provide you with the skills and guidance you need.

• If you are disabled, ASK ABOUT THEIR POLICY FOR DISABALED STUDENTS.  Are any areas of the college or aspects of the curriculum that disabled students may have problems accessing?  If you are given a tour of the University seek out disabled students and ask them what their experience is of staff attitudes to inclusion.  I actually advised a prospective student with a disability not to study at my university because I felt their attitude was so bad and I didn’t want her to suffer the same disappointment and frustration that I had.

• Talk to former students of the course you are thinking of joining.  Ask them how they enjoyed the experience and weather the knowledge they came out with actually matched their expectations when they started.

• Ask what happened to the students who graduated from your prospective course.  Did they get jobs? Become self employed? Continue their studies?

I hope the retelling of my experiences here is of some use to you and if you’d like to add this blog as a ‘guest’ post to your readership then please get in touch with me.  The more of you who are willing to challenge Universities on exactly what you’re getting for your money the better off you’ll all be.

*If you don’t recognise that quote, you don’t watch enough Disney movies.