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Crip Pride!
Aug. 19th, 2008 08:05 pmI feel the need to clarify something for some people. Unfortunately, I feel the need to clarify this for people who are not on my friends list, but since this is where I rant, you all get to... er.... be clarified, even though I doubt any of you really need the clarification, such is the wisdom of my F-list!
I have Multiple Sclerosis. This is not news, I know... I talk about it here a lot. I don't, however, talk about it in person often, except to folks I know really, really well.
MS is a medical condition. It is firmly in the realm of the medical... It is a disease... It is something that is (and I use STRONG quotes here) "Wrong" with me. It is also personal, private, and just not always something I want to talk about.
I am also Disabled. I am a person with a disability. I want to point out that when I identify myself as "Disabled," I am capitalizing the "D." This is because it is an issue of identity. It is a label that defines me as a member of a community. I dare say that it is even a cultural marker, although maybe not in the strictest sense of the word. (While it's true that we Disabled folks have some social norms that are unique to our community, we don't really have a language or other markers of a true culture.)
My point here is that for me, the two are separate. Yes, my disability was caused by my medical condition, but my being Disabled is a declaration of my membership in a community.
This is important because when disability is seen in the paradigm of the medical, we get split into artificial sub-categories based on pathology and diagnoses. When it is seen as a medical issue, the direction of our community, the "Control," if you will, gets taken out of our hands and put into the hands of doctors, clinicians, social workers; people who are generally not us.
There is power in community, and there is pride. I am new to the Disabled community, yet I am not ever asked to qualify myself when I am with other Disabled folks. I am not asked what is "Wrong with me." I am welcomed and I am even learning to feel some rather strong feelings of pride around it.
But the most important part is that I am never, ever made to feel that I am NOT ABLE.
Recently, I took part in a focus group to help establish training for first responders in emergency situations such as natural disasters and the like. The very well intentioned folks for whom the focus group was set up to inform were concerned about how disabled people were handled in a recent huge drill that was done to identify areas where first responders needed training. They asked questions about how we wanted information to get to us, what "Accessibility" meant in terms of shelters, etc.... It was a wonderful, well intentioned plan to get the information from the Disabled community itself; how could they help us in an emergency situation get the life saving services we needed? It was a great experience.
And when I say things like "One thing that concerns me is that I will be safely and securely shuffled off to a shelter and taken care of," this comment is met with blank stares of confusion from non-disabled folks ( although several of the Disabled people there, who guessed where I was going had knowing smirks on their faces as if to say: "Go get 'em, Bug!").
I went on to say that I am an ASL interpreter. I have a skill that would be extremely useful in a disaster. I am concerned that I will not be allowed to participate in the relief effort because I am Disabled; that provisions will not be made to make use of our skills. We can and NEED to be able to help. THAT is what accessibility looks like.
It was later admitted to me by several good people that the thought that we, as a community, did not just need to be rescued, but that we could actually be useful was never thought of. This is what happens when Disability is seen as a medical issue and when policies regarding the accommodation of Disabled are designed by even the most well intentioned and educated able-bodied folks. Our strengths are missed.
I have Multiple Sclerosis. This is not news, I know... I talk about it here a lot. I don't, however, talk about it in person often, except to folks I know really, really well.
MS is a medical condition. It is firmly in the realm of the medical... It is a disease... It is something that is (and I use STRONG quotes here) "Wrong" with me. It is also personal, private, and just not always something I want to talk about.
I am also Disabled. I am a person with a disability. I want to point out that when I identify myself as "Disabled," I am capitalizing the "D." This is because it is an issue of identity. It is a label that defines me as a member of a community. I dare say that it is even a cultural marker, although maybe not in the strictest sense of the word. (While it's true that we Disabled folks have some social norms that are unique to our community, we don't really have a language or other markers of a true culture.)
My point here is that for me, the two are separate. Yes, my disability was caused by my medical condition, but my being Disabled is a declaration of my membership in a community.
This is important because when disability is seen in the paradigm of the medical, we get split into artificial sub-categories based on pathology and diagnoses. When it is seen as a medical issue, the direction of our community, the "Control," if you will, gets taken out of our hands and put into the hands of doctors, clinicians, social workers; people who are generally not us.
There is power in community, and there is pride. I am new to the Disabled community, yet I am not ever asked to qualify myself when I am with other Disabled folks. I am not asked what is "Wrong with me." I am welcomed and I am even learning to feel some rather strong feelings of pride around it.
But the most important part is that I am never, ever made to feel that I am NOT ABLE.
Recently, I took part in a focus group to help establish training for first responders in emergency situations such as natural disasters and the like. The very well intentioned folks for whom the focus group was set up to inform were concerned about how disabled people were handled in a recent huge drill that was done to identify areas where first responders needed training. They asked questions about how we wanted information to get to us, what "Accessibility" meant in terms of shelters, etc.... It was a wonderful, well intentioned plan to get the information from the Disabled community itself; how could they help us in an emergency situation get the life saving services we needed? It was a great experience.
And when I say things like "One thing that concerns me is that I will be safely and securely shuffled off to a shelter and taken care of," this comment is met with blank stares of confusion from non-disabled folks ( although several of the Disabled people there, who guessed where I was going had knowing smirks on their faces as if to say: "Go get 'em, Bug!").
I went on to say that I am an ASL interpreter. I have a skill that would be extremely useful in a disaster. I am concerned that I will not be allowed to participate in the relief effort because I am Disabled; that provisions will not be made to make use of our skills. We can and NEED to be able to help. THAT is what accessibility looks like.
It was later admitted to me by several good people that the thought that we, as a community, did not just need to be rescued, but that we could actually be useful was never thought of. This is what happens when Disability is seen as a medical issue and when policies regarding the accommodation of Disabled are designed by even the most well intentioned and educated able-bodied folks. Our strengths are missed.