Disability and advocacy. . . and activism. . . and other things
I have been asked to give a talk to my department next month. The stated topic is "Advocacy for Disabilities."
I'm quite excited because this is a chance to really get into things with a 201 audience. Usually when I talk to medical groups about disability I have to start from the beginning and convince them that they need to care about disabilities in the first place, define disability and so on. This audience will mostly have heard that talk from me already and largely consists of people who have worked in the disability field for years, in some cases longer than I've been alive. It will include doctors, nurse practitioners, psychologists, social workers and trainees in the field of developmental disability, people who may see 15 children and teens with autism in an average week, plus some with ADHD, Down Syndrome, CP and so on. I know these people can have MANY misconceptions of course but it's still a different starting point than talking to a group of medical students or general pediatricians.
It got me thinking about the difference between awareness, advocacy, activism and allies, and also the difference between self-advocacy and general advocacy. Like, if a person with a disability advocates for themselves and their own need for accommodations, that makes sense to call it self-advocacy. But if a person with a disability advocates for larger disability causes, is it right to call them a self-advocate and meanwhile call non-disabled people just advocates? I read a blog post somewhere about how PWD should just be the advocates, and we should call professional and parent advocates something else, like "parent advocates" or "other advocates" or maybe "allies." I am going to try to find that blog post. . . any one else remember it? Any other thoughts on the differences between these terms and which ones you prefer and why?
I was going to go into some some of the history of the disability rights movement in the US and the development of some of the relevant laws. I had known for years about the disability activist take-over of the San Francisco Federal Building, but I only recently learned that the Black Panthers supplied them with food (intersectionality!) and that they used sign language to communicate with the outside world (disability positivity!) - I read the story here by the way.
We have to know about the laws at work because we end up educating families about their children's rights. They come to the doctor and instead get a law education. I was going to ask people to raise their hands if they have ever had a family tell them something a school said which was in fact illegal. And then I was going to ask who has had that happen in the last year? Month? Week? I had a family once say they "didn't do 504 plans" in their district (for students with disabilities who do not qualify for special education services but are entitled to accommodations.) I was like, well, there's this law. It's a federal law. It was passed over 40 years ago. So the school district can't exactly refuse to follow Section 504 of the Rehabilitation Act of 1973.
I was going to look into some known disability advocacy/awareness group and look at their mission statements (are they mostly looking for a charity or a cure?) and if they include people WITH whatever disability in their organizational structure. I can't say everything I want to say about Autism Speaks to this audience, but I mean, their mission statement is right on their website, and so are mission statements of other groups including disability-run groups and I can let people draw their own conclusions.
And I was also going to challenge the group to list disability advocates. I bet they can list a lot of famous people with disabilities but I wouldn't count someone as an advocate if they are simply famous for being disabled or are a famous person who has a disability. I was going to compile their list of people (living or dead) and also make a list of my own of people they may not have heard of. I was also going to note how many of them are straight white men and go into intersectionality a little bit and draw some parallels between disability rights and other civil rights.
So . . . who would you put on such a list? I was going to say, US names only please, but I really want in include Dave Hingsburger for his work in sexuality education for people with developmental disabilities, and he's Canadian. So I'd say, please suggest any names even if I don't end up using them. I may put up the whole list this group generates (unless someone doesn't want me to use their suggestion for any reason) even if I can't go into more than a few of the people in depth, because part of the point I want to make is that there are all these amazing disability advocates and activists out there. . . that even people in the disability field have never heard of. And that these people are their patients' history and their patients may become activists themselves in the future.
Any other thoughts on what I should include/leave out/emphasize?
I'm quite excited because this is a chance to really get into things with a 201 audience. Usually when I talk to medical groups about disability I have to start from the beginning and convince them that they need to care about disabilities in the first place, define disability and so on. This audience will mostly have heard that talk from me already and largely consists of people who have worked in the disability field for years, in some cases longer than I've been alive. It will include doctors, nurse practitioners, psychologists, social workers and trainees in the field of developmental disability, people who may see 15 children and teens with autism in an average week, plus some with ADHD, Down Syndrome, CP and so on. I know these people can have MANY misconceptions of course but it's still a different starting point than talking to a group of medical students or general pediatricians.
It got me thinking about the difference between awareness, advocacy, activism and allies, and also the difference between self-advocacy and general advocacy. Like, if a person with a disability advocates for themselves and their own need for accommodations, that makes sense to call it self-advocacy. But if a person with a disability advocates for larger disability causes, is it right to call them a self-advocate and meanwhile call non-disabled people just advocates? I read a blog post somewhere about how PWD should just be the advocates, and we should call professional and parent advocates something else, like "parent advocates" or "other advocates" or maybe "allies." I am going to try to find that blog post. . . any one else remember it? Any other thoughts on the differences between these terms and which ones you prefer and why?
I was going to go into some some of the history of the disability rights movement in the US and the development of some of the relevant laws. I had known for years about the disability activist take-over of the San Francisco Federal Building, but I only recently learned that the Black Panthers supplied them with food (intersectionality!) and that they used sign language to communicate with the outside world (disability positivity!) - I read the story here by the way.
We have to know about the laws at work because we end up educating families about their children's rights. They come to the doctor and instead get a law education. I was going to ask people to raise their hands if they have ever had a family tell them something a school said which was in fact illegal. And then I was going to ask who has had that happen in the last year? Month? Week? I had a family once say they "didn't do 504 plans" in their district (for students with disabilities who do not qualify for special education services but are entitled to accommodations.) I was like, well, there's this law. It's a federal law. It was passed over 40 years ago. So the school district can't exactly refuse to follow Section 504 of the Rehabilitation Act of 1973.
I was going to look into some known disability advocacy/awareness group and look at their mission statements (are they mostly looking for a charity or a cure?) and if they include people WITH whatever disability in their organizational structure. I can't say everything I want to say about Autism Speaks to this audience, but I mean, their mission statement is right on their website, and so are mission statements of other groups including disability-run groups and I can let people draw their own conclusions.
And I was also going to challenge the group to list disability advocates. I bet they can list a lot of famous people with disabilities but I wouldn't count someone as an advocate if they are simply famous for being disabled or are a famous person who has a disability. I was going to compile their list of people (living or dead) and also make a list of my own of people they may not have heard of. I was also going to note how many of them are straight white men and go into intersectionality a little bit and draw some parallels between disability rights and other civil rights.
So . . . who would you put on such a list? I was going to say, US names only please, but I really want in include Dave Hingsburger for his work in sexuality education for people with developmental disabilities, and he's Canadian. So I'd say, please suggest any names even if I don't end up using them. I may put up the whole list this group generates (unless someone doesn't want me to use their suggestion for any reason) even if I can't go into more than a few of the people in depth, because part of the point I want to make is that there are all these amazing disability advocates and activists out there. . . that even people in the disability field have never heard of. And that these people are their patients' history and their patients may become activists themselves in the future.
Any other thoughts on what I should include/leave out/emphasize?