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Aug. 29th, 2015 10:42 pm
Same old, same old
Today I attended a conference largely aimed at parents of children with a particular condition. The specific condition doesn’t matter here. The information sheet handed out about the agency that sponsored the conference, an agency which, I might add, does a lot of great things, wrote that this condition is “one of the most devastating of all” conditions in a broader category.
A few years back, in medical school, I was taught that a condition I have was “absolutely devastating.”
Same problem, different day, different condition.
A speaker at the conference referred several times to people with this condition as “sufferers.”
There were several older teens with the condition in the room who seemed to me to have spent the day socializing with one another as well as participating in the sessions. I didn’t poll any of them directly, but from the laughing and high-fives and hand-holding, there didn’t seem to be a lot of suffering going on. Oh, their team –that I was on too - lost a game of medical Jeopardy and they groaned some. Does that count? A younger child, brought over from childcare by his mother, seemed to be suffering because he wasn’t immediately being given the particular food he was demanding. This also did not seem to be a direct result of his condition.
You don’t actually need me to find other specific examples of the term “suffer” or “sufferers” being applied to people with disabilities without their input, do you?
I mentioned the “devastating” thing to someone who had not written the piece, but written other newsletter-type pieces for the organization, who said the language was probably fine because it was what was in use by the advocacy organization. They were somewhat surprised when I pointed out that didn’t mean the language was sanctioned by people who actually had the condition in question. To my knowledge (which is admittedly incomplete) none of the people involved running this organization have the condition in question.
There has been a burst of talk online, lately, about a major purported advocacy organization for still another condition. Someone who recently published a book about that condition, also wrote an op-ed piece about the need for advocacy organizations to listen to and include people with the condition they purport to represent. The organization in question wrote back, not directly addressing this concern and quoting only non-disabled parents.
Today at the conference, the question came up about peers and friendships for teens with disabilities. A father had found that his child was well-liked at school but didn’t have friendships with classmates outside of school. In the past year, the teen had made other friends with their condition and was now always on the phone with them being social. He solicited input from other parents and I put in my two cents as an adult with a disability. He, and a nurse practitioner who had been caring for children and adults with this condition for years, listened with amazement as I talked about the idea that a true peer group for a person with a disability, at least at times, often includes other people with disabilities. “Fascinating,” said the nurse practitioner, as though the notion of supporting social relationships between people with disabilities was news to her.
The father pressed me about whether I meant my friendships with others with disabilities mattered because they had a similar condition. I talked about pan-disability advocacy, that while specific support from others with a shared condition was helpful, often I found just as much connection with others with a variety of conditions.
Last week at work I mentioned my re-read of Karen (a book written in 1953 about a child with cerebral palsy) and was asked if I was reading it to better understand my own experience with cerebral palsy. It really doesn’t reflect my own medical experience much at all. But it does help me better understand my own experience as a person with a disability. Knowing where my community has been helps me better focus on where we’re going.
It is often quoted, likely misquoted, that those who do not study history are doomed to repeat it.
I think that one has to recognize that a past situation was a problem before one can prevent repeating it. Otherwise, the past never becomes the past, but just gets perpetuated in the present as the status quo.
The specific condition doesn’t matter much. I mean, it matters for getting appropriate health care. Having a parent conference for children with a specific condition can make a lot of sense. But in the ways I’m talking about here, the specific condition doesn’t matter much at all.
What matters is that the ways people speak, write and think about people with disabilities. And that goes double for non-disabled people in supposed positions of advocacy. There is no excuse for them to be using negative language that is not generally in use by people with disabilities ourselves. There is also no excuse for so many people running disability advocacy organizations to be non-disabled. We keep saying that, too.
Because none of this is actually new. “Nothing about us, without us” has been a disability rights slogan for decades.
There was a lot of good at the conference today, and a lot of ways I see progress. I was especially encouraged by the inclusion of the teens to participate in as much of the conference as they wanted.
But there was a lot of same-old, same-old too.
Maybe some of those teens will grow up to fix it?
A few years back, in medical school, I was taught that a condition I have was “absolutely devastating.”
Same problem, different day, different condition.
A speaker at the conference referred several times to people with this condition as “sufferers.”
There were several older teens with the condition in the room who seemed to me to have spent the day socializing with one another as well as participating in the sessions. I didn’t poll any of them directly, but from the laughing and high-fives and hand-holding, there didn’t seem to be a lot of suffering going on. Oh, their team –that I was on too - lost a game of medical Jeopardy and they groaned some. Does that count? A younger child, brought over from childcare by his mother, seemed to be suffering because he wasn’t immediately being given the particular food he was demanding. This also did not seem to be a direct result of his condition.
You don’t actually need me to find other specific examples of the term “suffer” or “sufferers” being applied to people with disabilities without their input, do you?
I mentioned the “devastating” thing to someone who had not written the piece, but written other newsletter-type pieces for the organization, who said the language was probably fine because it was what was in use by the advocacy organization. They were somewhat surprised when I pointed out that didn’t mean the language was sanctioned by people who actually had the condition in question. To my knowledge (which is admittedly incomplete) none of the people involved running this organization have the condition in question.
There has been a burst of talk online, lately, about a major purported advocacy organization for still another condition. Someone who recently published a book about that condition, also wrote an op-ed piece about the need for advocacy organizations to listen to and include people with the condition they purport to represent. The organization in question wrote back, not directly addressing this concern and quoting only non-disabled parents.
Today at the conference, the question came up about peers and friendships for teens with disabilities. A father had found that his child was well-liked at school but didn’t have friendships with classmates outside of school. In the past year, the teen had made other friends with their condition and was now always on the phone with them being social. He solicited input from other parents and I put in my two cents as an adult with a disability. He, and a nurse practitioner who had been caring for children and adults with this condition for years, listened with amazement as I talked about the idea that a true peer group for a person with a disability, at least at times, often includes other people with disabilities. “Fascinating,” said the nurse practitioner, as though the notion of supporting social relationships between people with disabilities was news to her.
The father pressed me about whether I meant my friendships with others with disabilities mattered because they had a similar condition. I talked about pan-disability advocacy, that while specific support from others with a shared condition was helpful, often I found just as much connection with others with a variety of conditions.
Last week at work I mentioned my re-read of Karen (a book written in 1953 about a child with cerebral palsy) and was asked if I was reading it to better understand my own experience with cerebral palsy. It really doesn’t reflect my own medical experience much at all. But it does help me better understand my own experience as a person with a disability. Knowing where my community has been helps me better focus on where we’re going.
It is often quoted, likely misquoted, that those who do not study history are doomed to repeat it.
I think that one has to recognize that a past situation was a problem before one can prevent repeating it. Otherwise, the past never becomes the past, but just gets perpetuated in the present as the status quo.
The specific condition doesn’t matter much. I mean, it matters for getting appropriate health care. Having a parent conference for children with a specific condition can make a lot of sense. But in the ways I’m talking about here, the specific condition doesn’t matter much at all.
What matters is that the ways people speak, write and think about people with disabilities. And that goes double for non-disabled people in supposed positions of advocacy. There is no excuse for them to be using negative language that is not generally in use by people with disabilities ourselves. There is also no excuse for so many people running disability advocacy organizations to be non-disabled. We keep saying that, too.
Because none of this is actually new. “Nothing about us, without us” has been a disability rights slogan for decades.
There was a lot of good at the conference today, and a lot of ways I see progress. I was especially encouraged by the inclusion of the teens to participate in as much of the conference as they wanted.
But there was a lot of same-old, same-old too.
Maybe some of those teens will grow up to fix it?