Tell the canvassers to start opening doors for disabled
People living with disability are desperate, writes Sarah Caden, and we need to give callers a dose of our pain
Published 14/02/2016 | 02:30
When the canvassers come to my door, there's only one thing I want to know from them. What are they going to do for people with disabilities? Obviously, they can't answer that. It's too big.
You'd nearly feel a bit sorry for them but the sound of footsteps on the stairs puts paid to that.
Canvassers tend to call at children's bedtime. Children tend to want to know who is at the door. So they come down and my question to the canvasser moves from the abstract to the very, very real.
What are you going to do for this small person with a disability? What are you going to do for Mary, my five-year-old with Down syndrome, who stands before you now in her pyjamas, as cute as hell and with barely a support from the State to speak of?
And, for that matter, what are you going to do for her eight-year-old sister, Anna, standing beside her equally cute as hell in her pyjamas, who at this stage is Mary's only hope of real care when I'm gone? Not that I can go anywhere: get sick, get old, die. I just can't. Because I don't trust that anyone in power really gives a damn about disability.
Or, to get personal, gives a damn about my child.
Mary is five. She is in junior infants in the same mainstream primary school as her sister. In her obligatory pre-school psychological assessment, Mary was diagnosed with a mild intellectual disability. This meant that she was let go from the services - the state services that provide speech and occupational therapy, physiotherapy and general support - because she wasn't considered in need of them any more. She's not even eligible to attend the service's friendship clubs.
Anything she wants or needs, we do it and we pay for it. She can't speak like a typical five-year-old, so she needs speech therapy. She has relatively good muscle tone, but she needs physiotherapy. That's to make sure she's walking okay and that her feet aren't too flat and that she's not building up problems for when she is an adult. She needs OT to help with writing and other skills that will help to make her a relatively independent adult who could hold down a job and not cost you so much when I'm gone.
We source and pay for all of this. This is not support that Mary is given by anyone but us.
Outside of school, no one is overseeing Mary. She has no key worker or a point of contact. She has us. And school, who are terrific. But their goodwill is a lucky fluke. If you run into a school with a principal who really doesn't want the hassle of "children like these" - as one said during a PFO to a kid with DS - then you're screwed.
It's all down to goodwill. Because government policy is just cutback after cutback, with no real sense that people's lives are being damaged and even destroyed.
The Disability Federation of Ireland is encouraging the 600,000 people affected by disability to tell their stories publicly, tell them at the door to canvassers, to make disability an election issue.
Until last year, Mary's mild assessment meant that she would not have qualified for any resource teaching hours in school either. Kids with DS and a moderate or severe assessment, or DS and a hearing or sight issue, were entitled to hours. But not the mild kids.
Thankfully, a long-fought campaign by parents to change this bore fruit last year and now, Mary and kids with DS and a mild assessment get two and-a-half resource hours per week. Still less than kids who are moderate, but better than nothing.
I know three more 'mild' kids starting school in September. Three more cut adrift. People can't believe that when you tell them.
I know two other kids with moderate assessments. Their parents have been warned that due to cutbacks there won't be much by way of outreach visits to schools or therapist appointments.
Mothers of new babies with DS have started contacting me lately out of sheer desperation.
Due to cutbacks, the services are no longer able to provide parents' mornings, where they could meet those in the same boat and banish the awful sense of isolation.
They can't provide the key workers who made sanity-saving home visits in the first year either, because of cutbacks.
I fear for some of these mothers. I would have sunk without trace if we had had no support in Mary's early years.
I know you're glazing over. I know you're thinking "Here they go again." But here we go again because it's getting worse. And no one seems to have any plan to make it better.
And you could live in that world. It doesn't just happen to other people. You can fall off a ladder. You can get sick. Life can just take a turn on you and suddenly you're in our ranks.
And they are our ranks. I don't have a disability. But I live with disability. And there are times when I think about politicians or people who could make change but don't make change. I hope it stays fine for you.
But is that what it takes? Do you have to know it, to live it, to give a damn?
On Thursday night, during the TV3 leaders' debate, Enda Kenny admitted that mistakes had been made by the Fine Gael-led government in relation to health. He called the removal of discretionary medical cards from adults and children with disabilities "one we could have done without".
It was a mis-step because it showed up their 'out of sight, out of mind' attitude to people with disabilities. And those people became visible, told their stories.
One family went so far as to display on The Saturday Night Show their child's monthly needs in a pile of equipment and medicines. No one should have to do that in order to get what is right for their child: that is, being regarded as someone who deserves to be recognised and supported. But, you know, we have to.
And that's why my five-year-old will be facing down every canvasser who comes to my door.