My son doesn’t consider himself disabled #IDPwD
Today is International Day of People with Disability (IDPwD). Proclaimed back in 1992 by the UN, December 3 is universally recognised as a day where we acknowledge the challenges faced by people with disabilities everywhere.
This year’s theme is “Inclusion matters: access and empowerment for people of all abilities.”
As a parent of a child with vision impairment (albinism) and autism, I am absolutely passionate about inclusion. And I mean REAL inclusion – where kids with special needs are accepted fully into a mainstream setting and not excluded from any activity.
Real inclusion where there is no real differentiation between the able or disabled child.
Real inclusion where any person of any ability has the right and the capacity to advocate for their own needs and to readily access required supports.
To mark IDPwD I wanted to write a post about my thoughts on the importance of the theme and of the day itself. But it struck me that as I don’t have a disability myself, my words could ring hollow. Instead I wanted the words to come from someone who lives with disability every day. So I asked my son, Gilbert, for this thoughts.
However when I talked to him about contributing his thoughts for IDPwD, he surprised me by declaring that he doesn’t consider that he has a disability or that he is disabled at all.
To be honest, I’m not totally surprised by his declaration. Back in June when we worked together to raise awareness for World Albinism Awareness Day, a big part of his presentations to his classmates was his belief that he was no different to them. (BTW you should check out his presentation for yourself – it’s great).
As we continued our discussion about a possible post for IDPwD, it became even more clear that Gilbert believes there is nothing really that different about him. And I found myself beyond proud that he had such healthy self-esteem while at the same time also feeling slightly concerned that his view of his condition could threaten his access to much needed help and supports moving into the future.
See? He is the same as any other 11 year old…
As parents we’ve never withheld the fact that he has additional needs. He wore glasses from the age of 11 months old and has been in and out of specialist and therapists offices all his life. It’s all he’s ever known.
He began his education in a special needs class and moved to mainstream schooling at the start of Year 2. He will enter Year 6 next year and has had a very positive, inclusive and supportive experience all through his primary school years.
We have been very lucky but we’ve also worked very hard to get here.
On the one hand I’m proud that my son doesn’t consider himself “disabled.” I’m stoked that he doesn’t define himself by a diagnosis or a single condition. I’m relieved that, so far, he has grown up with a healthy view of himself. We’ve always done our best to emphasise his strengths, as well as address his needs – I really like that he doesn’t see himself through the prism of either of his conditions.
But on the other hand, he needs to be aware of his conditions and what they mean to him on a daily basis. For instance, he needs to understand the reality of visual fatigue and how it does affect his concentration levels every day. He needs to be aware of his limited skills in organisation and executive functioning and how they affect his ability to plan and manage his life.
As much as I’m proud of him not seeing himself as any different to his peers, he needs to accept that he DOES have certain disabilities. This is the only way he’ll be able to effectively advocate for himself throughout high school and beyond.
Being aware and proactive about how his conditions affect him will help him to rightly access the supports that will assist him to live as independently as possible.
This is what the theme of this year’s IDPwD is all about. Access and empowerment.
While my son may not yet identify as a person with a disability, IDPwD is still an important day for him. He may not recognise it right now but it’s a day of promise and hope for the future. My hope is that he will have access to everything he needs to live as independent a life as possible.
So he is empowered to be the best he can be.
After all, that’s really what we all want for our children, right?
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