Questions, questions everywhere

I love writing and reading about disability but I fear that I might have done so much of it lately that it has actually melted my brain into slush. When I look at an article by Dan Goodley or Colin Barnes, my brain shuts down and I refuse to take anything in, which is an enormous concern giving the nature of the course I’m doing (in case you’ve missed it, I’m doing the Certificate in Disability Studies in NUI Maynooth. I must be mad).

But during the Study Skills seminar  we had this weekend, it occurred to me that the reason I’m not taking anything in is because I’m not being critical – I’m reading but I’m not probing, not asking ‘why?’ or agreeing or disagreeing. And when I thought about it, I thought perhaps that’s why it sometimes feels that we’re moving further away from equality for disabled people – because we aren’t asking ourselves (and the powers that be) important questions about topics that need to be discussed in order for us to be recognised as equal. Questions such as:

  •  Who has the authority to decide what you can’t do – you or other people? Do ‘professionals’ always know what’s best for you? Do they always act with your best interests in mind?
  • Who profits from your impairment? I mean, seriously, a set of four wheelchair tyres can cost over a grand whereas a set of new tyres for the car is around two, three hundred Euro. My tricycle, I’m informed is worth about four grand, whereas you can get a state of the art mountain bike for a grand. An adapted car costs far more than the same model of car, unadapted. Why?
  • Why has the head of Irish Rail not been brought to answer a case under the Equal Status Act? If you’re a regular train user you might have noticed that there is a sign saying ‘We comply with the Equal Status Act’ in the wheelchair space. Can that be true if you have to give twenty-four hours’ notice to travel?
  • If a disabled person decides that their primary aim in life is to be an absolute twat, should professionals have the right to comment? To stop them? To safeguard them?
  • These particular questions are addressed time and again without being resolved: Does the Personal Assistant Service exist now as it was originally intended? Should a Personal Assistant have the right to comment on your lifestyle choices? Do they have the right to refuse to enable you to make these choices if they’re ‘not what’s best for you’? Who knows what’s best for you?
  • Should your right to your own Personal Assistant (and the hours you receive) be affected by the availability of a spouse or family member to act as your ‘carer’? What if you don’t get on with your family or they’re just using you as an excuse to claim Carer’s Allowance? (This has happened to people I know).
  • To what extent are we our  worst enemy? How much of the oppression we experience from outside sources is actually external, and how much have we internalised?  And in blaming  ourselves for being disabled, how much power are we willingly handing over to the powers-that-be, that make life-changing decisions on our behalf on a regular basis?
  • Is it dangerous to ignore the realities of impairment, and can we accept our impairments and limitations without handing over powers to the ‘so-called professionals?’
  • What will lead to the defining moment where disabled people can really be trusted to have full control over their own lives and budgets? I mean, why are disabled people being frightened out of trying Personalised Budgets/Direct Payments? Are they really that complicated, or are disabled people led to believe this so that (God forbid) they never truly experience any sense of control over their own lives?
  • If the UNCRPD has been ratified, why has there not been significant investment into Personal Assistance in the 2018 Budget? Why aren’t we building more houses for everyone, including disabled people waiting to move out of long-stay institutions and hospitals?

Achieving equality for disabled people lies in tackling these, and other tough questions. It means never settling, never accepting anything as a given without a logical and reasonable explanation. It means not taking equality as a given when many of us know this is far from the case.

When we stop questioning these important issues, we become complacent. And I think we can all agree that we simply cannot afford to do that.

 

 

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Nonetheless, I Persist (Poem)

Hi all dedicated Wobbly Yummy Mummy Fans!

For the next six months or so I predict my posting on here will be a tad sporadic, so let me take this opportunity to apologise in advance. I’m studying for the Certificate of Disability Studies in NUI Maynooth, so that’ll be my priority for the next while. But I promise I will update this blog when I can!

In the meantime here is a poem inspired by what I’ve studied so far. Enjoy!

Look at you there, looking at me
As you will me to become whatever you see,
Your handy, capable hero, a huge lump of clay
to be moulded, designed in whatever way
you choose.

Choice.

You say, that if you had the choice
(and you say this so arrogantly, with your own voice)
That no way would you spend the rest of your life
Battling spasms, twisted limbs, pain and yet – in spite
Of this
I persist
To exist.

Do you honestly think that I cannot hear
That I’m the embodiment of all of your fears?
You tell me I’m great, a pure inspiration.
You don’t know my name! But you think
you still have the right to dictate my place
in this so-called ‘great’ nation.

I’m not here to inspire, or make you feel good
and yet I’m not able to live a free a life as I should.
I carry the weight of your negative assumptions on my back
While you casually remind me of all that I lack.

I’ll never walk properly, my hands are weak
And I sound like a drunkard whenever I speak.
Would I not be happier surrounded by ‘my kind’
where my existence wouldn’t push the boundaries of your tiny mind?

I am not scrounger, or inspiration, or hero,
And I won’t be hidden or locked away either.
I’m a Trinity graduate, a writer, a wife
Who, in spite of your assumptions, has a pretty good life.
My ‘incapacitated’ body bore a daughter full of light,
And she knows that, one day, she must continue the fight:
Fight for equality
Fight to be seen as ordinary –
Fight to make mistakes.
I’d rather be seen as flawed than a fake.

You see,
I am not your ‘handy-capable’ hero,
Or an inspiration,
Or a workshy scrounger,
Or a burden, or a waste of space.
This is no tragedy
I am me – spastic, wobbly, gabby
And, ‘in spite’
Of this
I choose
To persist
To exist.