I just wrote the team there and this is what I said to them. (I hope they don't mind.)
Hi, could you please pass along to the H-CARDD team my
thanks and my congratulations.
Congratulations for completing and publishing this report.
My thanks, both as a professional and as a disabled person,
for doing radical research that ‘speaks truth to power’ … you are constantly
creating facts in an arena where opinions and anecdotes used to reign. Because
of your work people in general, but most importantly, people in power can’t
‘not know’ this. It matters. It shows that the lives of people with
intellectual disabilities are on the line. It affirms the idea of both ableism
and disphobia as a constant theme and a constant threat in the lives of people
with disabilities.
I am in awe of your commitment and your courage.
Now the opinions in the letter are mine and the reading of the report is filtered through my understanding of the world. But this is what I took from reading the report.
Research like this gives us ammunition with which to clearly state our case when we want to advocate or inform or make policy. It allows us to confirm what we've seen as a real phenomenon.
I invite you to read the whole report which you can link to from the one I've provided.
Take the time.
Become informed.
It matters.
Documented data instead of anecdotal statements does make a difference.
ReplyDeleteI hope that the relevant agencies actually take hold of this data and work to reduce the disparities in care. I imagine the US is worse, given that we have a business model of health insurance/payment for care. Funding source has an outsize impact on care choices available, as well as on the community support resources needed.
Thanks for this, and for including the link to the source.
ReplyDeleteFunny how much I'm learning since leaving my DSP position. Hoping to find another soon, but in the meantime I'm finding all sorts of interesting resources, and things to do with my time.