People With Disabilites Speak Their Truth

Though I am a disabled person, this does not mean that I intimately understand someone whose disability is different than mine.  Because ableism is so ingrained in our culture that means I still have to retrain my mind to weed out much of what I have internalized.  From my research, I have come to realise that far too often, those who act as carers are given more accord than us, and are treated as experts – for example, look at the conversations surrounding parents who are raising a child with disabilities.

In the more recent posts I have written about disability, I have asked for comments directly from people living with disability, firm in the belief that no one can tell our stories better than us and that in doing so, we are fighting for the basic human respect, accommodation and rights that are being denied us.  It also serves as an opportunity for us to learn about people living with disabilities that are different than ours.

I recently came across two movies that I would like to share with you.

The first movie that I would like to share with you are called The Kids Are Alright. [note: video comes with transcript]  This video is about people living with MDS protesting the annual Jerry Lewis Telethon. They argue that rather than helping people with disabilities that the telethon is harmful because it creates an environment of pity, turns pwd into a minstrel show to raise money, and it’s figurehead Jerry Lewis, is out and out ableist.  I think this video is important because it really highlights why PWD are the ones best able to advocate on our own behalf and why leadership for rights must be lead by us. Pity is not help.

The second video is called Life’s A Twitch.  It’s about a man living with Tourette syndrome and how he struggled to come to terms with his disability.  He speaks about attempting to hide his ticks and feeling unaccepted.  What stood out to me was the fact that for years he wondered about when he going to die because of the level of unhappiness he felt.  Duncan talks about the painful process of coming to terms with his disability and realising that while he is a man living with Tourette syndrome that Tourette syndrome is just a facet of who he is.

 What are the most important things that people should know about your disability or disability rights?

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