During the 20 years since B was born, she has gone from being mentally handicapped, to having special needs, to being severely disabled, to having high support needs, but now apparently she is merely ‘disabled’.
And I’m not comfortable with that.
It’s hard to discuss because it makes people very angry, as I found out this week on twitter.
Language has become an emotive issue on social media, with many people (like me) wary of some topics because we don’t know the current terms in use and the backlash can be ferocious if you get it wrong.
Some believe that changing language can change attitudes, and I agree: but the meaning of the favoured new words has to be crystal clear, especially in this area, where words affect attitudes, policies and the lives of real people.
Disabled is now the preferred term, yet someone walking with a limp can call themselves disabled, as one mother pointed out in a radio interview this week.
If that’s how the public and policy makers think of disability, then they will never consider children and adults like my daughter in their plans.
Families like mine feel betrayed, ignored and abandoned, by the state, the media, and even sometimes the disability community itself. The current public discourse simply denies the existence of severe and profound disabilities.
Worse, I’ve noticed a trend for the term ‘severe disabilities’ to be flung around like confetti at a wedding, especially for inspirational stories like the ‘severely disabled’ man who has a brownie bakery in the US. Great for him, but he bears no resemblance to my daughter. And a journalist I respect asked on twitter to speak to a severely disabled person yesterday. I’d love to see her try to get a usable answer from my non verbal daughter. The only time that severe disabilities seem to be used correctly is in the reporting of medical negligence cases.
The denial seeps through every level of state and society: Through policy, language, and by ignoring any attempt to discuss the issues.
My eyes were opened in 2001 when I was searching for a school for my daughter and all I was offered was a so-called Day Development Centre (DDC) where she would get great care, but no access to teachers. When I challenged this, the existence of DDCs was denied by the State. So we took a case to court, and it was settled in my daughter’s favour. Because children in Ireland have a constitutional right to an education, and that means access to a teacher. However that’s the only right that has helped my daughter. As an adult, she has no rights, especially as Ireland has still not ratified the UN Convention on the Rights of People with Disabilities.
So clarity is needed, rights are needed, and so is understanding and inclusivity.
This article has been doing the rounds, and is an explanation of why we should all use the term ‘disabled’, and I like most of it, apart from the last paragraph:
“We see, hear, speak, think, learn, process, read, write, move, and/or feel in ways that are less common than most.”
Because, you see, my daughter and many others like her, cannot do all those things.
Once again, her existence is being denied by being called ‘disabled’.
Personally I liked the term ‘special needs’ because it sounds positive, whereas disabled sounds negative to me, but I’m happy to describe my daughter as ‘disabled’, as long as her needs and disabilities are also included in its meaning.
I also do not believe that our lives are tragic or that my daughter suffers as this article seems to suggest, even if others feel that way. Nor would I describe my 20 year old as a ‘baby’ despite her functioning level (and that’s a post for another day).
I think if more support, more positive coverage, real rights and real help was provided to the disability community and their carers, then many of these issues would go away. For now the State is happy to sit back, do little, spend less, and watch us all fight each other.
There’s a long way to go. Only yesterday a well dressed tourist whispered “God Rest Her”, as he watched B in the street. “She’s not f*ckin’ dead yet!” was the reply I wanted to give. Instead I smiled, because I’m sure he meant well, and he’d probably never seen or read about anyone like my disabled daughter before…