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.

idpwd logo - www.idpwd.com.au

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.

Gilbert and a dinosaur - www.myhometruths.com

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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12 Responses

  1. IDPWD! How could I have forgotten! It used to be a big deal in my work when I used to edit a newsletter for the local disability sector. And yet 3 years later, it didn’t even twig til I saw your post! Good on you for raising awareness Kirsty xxx
    Janet aka Middle Aged Mama recently posted..Comment on What Does Your Christmas Tree Say About You? by Janet Camilleri

  2. I love it how the term “people of all abilities” is now used. I learned that from the father of a Downs Syndrome man. He calls him “differently abled” rather than disabled.

    • Kirsty says:

      Yes, I really do love that term. Disability is an older term that is still used in the context of days like this but it really is more about what people CAN do rather than those things they CAN’T. We talk in terms of difference rather than disability – emphasising that EVERYONE is different and everyone has their own strengths and weaknesses. It seems to have worked well so far – hoping we can also get through the teen years without too much pain x

  3. I can so totally relate to your concerns about Gilbert not identifying as being disabled. Also your pride at his healthy self-esteem! One of my sons is Aspergers. He was diagnosed at age 9. He doesn’t wish to ever speak of it or identify as being Aspie these days (he is 23 now)… so we respect his wishes. It was really only necessary when he was at school – so that he got the additional assistance where required. However, I would like him to be aware of his areas of weakness so that he can work on those things and also his strengths so that he can pursue a career that utilises them! All in all though – I love him just as he is. He is a gorgeous boy/man 🙂 xo
    Min@WriteoftheMiddle recently posted..Taking Stock – November 2015

  4. Language is so powerful, I think people of all abilities is a much more inclusive turn of phrase. And well done on raising a confident young man 🙂
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    • Kirsty says:

      Part of the issue is the fact that we don’t use the term disability in relation to his conditions – I prefer other terms like people of all abilities as well. But in a world where labels and diagnoses allow you to access help and support, it is something that he will have to realise one day, so he can receive the assistance he will needs.

  5. My daughter doesn’t think she is any different from her friends and I find this beautifully refreshing.
    Natalie @ OurParallelConnection recently posted..Who does this Google guy think he is?

    • Kirsty says:

      It’s great, it really is. And it wouldn’t worry me one bit if it wasn’t necessary for him to understand his conditions (and the need for labels in some cases) in order to access the supports and help that he needs. But I’m very proud that he is so confident in himself – as is your daughter as well x

  6. Lisa says:

    How great Gilbert doesn’t think he is any different to others! You guys have inclusion nailed! Glad to see other language described as disabled.
    Lisa recently posted..Taking Stock: November 2015

    • Kirsty says:

      Thanks Lisa. It probably helps that we don’t use the word disabled normally but it’s still a conversation that we need to have down the track so he can access the supports that he will need.

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