4 ms·

I’m sorry that you go through this. Next time, I will be more considerate when posting and tone it down. A lot of the issues you mention with young adults is a

I’m sorry that you go through this. Next time, I will be more considerate when posting and tone it down. A lot of the issues you mention with young adults is a generational divide in the disabled community: the post-ADA generation and the pre-ADA generation. The post-ADA people never had to truly fight for their rights against people that had true actual contempt against their existence as disabled human beings. On social media, it gets weird. The disabled identity online is completely incongruent with any semblance of a professional life, so if one wants to be successful in real life, it is best to run away from it if you are a disabled person. The disabled culture online scares normal and typical people, and for good reasons: people rage post about the indignities and injustices that they face as human beings on a regular basis. It makes normal people extremely uncomfortable at minimum. I have self-respect so I don’t have social media accounts besides HN and a Reddit account, which I use to assist others. Of course I could post horrible injustices that have occurred to me. But what would that do? Nothing, besides cause outrage. That is the problem right there. The post-ADA generation often does not realize that there are people out there that have absolute contempt just for your existence as a human being, and to win, you have to fight a nasty battle, take the high road, and chances are, you will lose and lose again. Eventually you may win, but you will probably be dragged in the dirt during the whole process. There are consequences but taking risks and doing the right thing ultimately prevail.

Loughla 6y ago
I had the privilege of working with one of the individuals who is featured in one of the iconic protest photos from the 1990 capitol crawl. I'm not as old as this person, and my personal experience with disability, and all of my professional experience are post ADA/AA. Listening to her story about life in the 50's and 60's and her experience with being (in her words) "institutionalized in hell" was just startling. It really put things into perspective for my professional career, and honestly, I can say that one day had more of an impact on my personal and professional trajectory than most other things I've done. It's still socially acceptable to mock and discriminate based on disability. People do it all the time. It's just. I don't know what the word is. Terrible doesn't seem strong enough. It's ridiculous. I don't know that there is a reason for me telling this story, other than to agree with your last sentence. The problem that I've run into, though, is that those individuals who really could make a splash - in my profession (higher ed), these tend to be folks on the autism spectrum who do not fit into stodgy, higher education 'conventional' expectations - do not have the know-how or the tools or the want to make a real flashy impact. They're afraid of social and economic consequences for speaking up. About half of my job is working with these folks to change systems and modify work/study spaces to implement universal design; for me, neuro-atypical universal design is the hardest to pin-down. That's what makes being sued all the time such a pain in the ass. It's always by someone who is self-diagnosed, and someone who leans into the 'perceived' part of disability definition. Maybe I'm getting too in the weeds here. Anyway. Not really sure what the point of all of this was, other than to say, thank you for the discourse. I appreciate it.
- disabled 6y ago
  You're welcome! You are an amazing, kind, and generous person. I am glad to have "met" you. If for some reason you want to email me, my email is in my profile (no pressure, I am not expecting it and it will not hurt my feelings if you don't). The previous post that you made reminded me of this post, so maybe you can see where I was coming from in the previous response (written by a disabled university professor): http://badcripple.blogspot.com/2013/04/shane-burcaw-laughter-is-not-always.html http://badcripple.blogspot.com/2013/04/shane-burcaw-laughter... While I am not as "vocal" as the author of that blog, William Peace, I do agree with him 100% on the issues he brings up, along with his discourse. I say this as an adult in my early 30s, who has seen a lot. It is definitely possible that I could be autistic (this is the first time that I have written such a statement ever, and I have never, not once, claimed that I am autistic ever), but it is not my place to claim that diagnosis or identity. Plus, it is fun to throw people off. Of course I have read books about females and autism (I am female) and books about autism in general. Such diagnoses are the responsibility of doctors, and it is not my place, nor appropriate, to make that claim, as there are professionals capable of making that assertation. (I did have a doctor who knows me really well ask me if I was autistic, though, kind of like a compliment.) From an accommodation standpoint, academically, I would need none for that disability as I am already on the record for 2 rare neurological diseases affecting my peripheral nervous system plus type 1 diabetes (autoimmune and insulin dependent), and I have enough help. One of those conditions is an autoimmune form of autonomic neuropathy that I have lived with since I was 3 or so, and it is believed that it caused the autoimmunity that caused my type 1 diabetes. The autonomic nervous system affects all sorts of things like even your propensity to socialize. Also, people with ASD often have autonomic dysfunction. Sorry to go off on a ramble, but I hope you found that interesting. This is the disease I am talking about, by the way: https://rarediseases.info.nih.gov/diseases/11917/autoimmune-autonomic-ganglionopathy https://rarediseases.info.nih.gov/diseases/11917/autoimmune-... As for the autistic identity, I don't see the point. I know who I am, so I do not need to claim it as an identity. So, those people who make an unnecessary huge deal out of it being their identity are taking it too far. Yes, it is part of who they are, but it is only a part. Yeah, UDL is extremely difficult and I imagine that your specific type of UDL is really just starting to emerge. I guess for neuro-atypical people it comes down to UDL of curriculum, UDL of the physical spaces (arrangement and what is used physically in the space), and UDL of the environmental features of that space (ie temperature, lighting, humidity, etc.), which you likely all do. Also, how to deal with interaction utilizing UDL between neuro-atypical and neurotypical individuals is next-level difficult, which is probably the most crucial component. But, you really are amazing! :-)

Loughla 6y ago

I had the privilege of working with one of the individuals who is featured in one of the iconic protest photos from the 1990 capitol crawl. I'm not as old as this person, and my personal experience with disability, and all of my professional experience are post ADA/AA. Listening to her story about life in the 50's and 60's and her experience with being (in her words) "institutionalized in hell" was just startling. It really put things into perspective for my professional career, and honestly, I can say that one day had more of an impact on my personal and professional trajectory than most other things I've done. It's still socially acceptable to mock and discriminate based on disability. People do it all the time. It's just. I don't know what the word is. Terrible doesn't seem strong enough. It's ridiculous. I don't know that there is a reason for me telling this story, other than to agree with your last sentence. The problem that I've run into, though, is that those individuals who really could make a splash - in my profession (higher ed), these tend to be folks on the autism spectrum who do not fit into stodgy, higher education 'conventional' expectations - do not have the know-how or the tools or the want to make a real flashy impact. They're afraid of social and economic consequences for speaking up. About half of my job is working with these folks to change systems and modify work/study spaces to implement universal design; for me, neuro-atypical universal design is the hardest to pin-down. That's what makes being sued all the time such a pain in the ass. It's always by someone who is self-diagnosed, and someone who leans into the 'perceived' part of disability definition. Maybe I'm getting too in the weeds here. Anyway. Not really sure what the point of all of this was, other than to say, thank you for the discourse. I appreciate it.

disabled 6y ago
You're welcome! You are an amazing, kind, and generous person. I am glad to have "met" you. If for some reason you want to email me, my email is in my profile (no pressure, I am not expecting it and it will not hurt my feelings if you don't). The previous post that you made reminded me of this post, so maybe you can see where I was coming from in the previous response (written by a disabled university professor): http://badcripple.blogspot.com/2013/04/shane-burcaw-laughter-is-not-always.html http://badcripple.blogspot.com/2013/04/shane-burcaw-laughter... While I am not as "vocal" as the author of that blog, William Peace, I do agree with him 100% on the issues he brings up, along with his discourse. I say this as an adult in my early 30s, who has seen a lot. It is definitely possible that I could be autistic (this is the first time that I have written such a statement ever, and I have never, not once, claimed that I am autistic ever), but it is not my place to claim that diagnosis or identity. Plus, it is fun to throw people off. Of course I have read books about females and autism (I am female) and books about autism in general. Such diagnoses are the responsibility of doctors, and it is not my place, nor appropriate, to make that claim, as there are professionals capable of making that assertation. (I did have a doctor who knows me really well ask me if I was autistic, though, kind of like a compliment.) From an accommodation standpoint, academically, I would need none for that disability as I am already on the record for 2 rare neurological diseases affecting my peripheral nervous system plus type 1 diabetes (autoimmune and insulin dependent), and I have enough help. One of those conditions is an autoimmune form of autonomic neuropathy that I have lived with since I was 3 or so, and it is believed that it caused the autoimmunity that caused my type 1 diabetes. The autonomic nervous system affects all sorts of things like even your propensity to socialize. Also, people with ASD often have autonomic dysfunction. Sorry to go off on a ramble, but I hope you found that interesting. This is the disease I am talking about, by the way: https://rarediseases.info.nih.gov/diseases/11917/autoimmune-autonomic-ganglionopathy https://rarediseases.info.nih.gov/diseases/11917/autoimmune-... As for the autistic identity, I don't see the point. I know who I am, so I do not need to claim it as an identity. So, those people who make an unnecessary huge deal out of it being their identity are taking it too far. Yes, it is part of who they are, but it is only a part. Yeah, UDL is extremely difficult and I imagine that your specific type of UDL is really just starting to emerge. I guess for neuro-atypical people it comes down to UDL of curriculum, UDL of the physical spaces (arrangement and what is used physically in the space), and UDL of the environmental features of that space (ie temperature, lighting, humidity, etc.), which you likely all do. Also, how to deal with interaction utilizing UDL between neuro-atypical and neurotypical individuals is next-level difficult, which is probably the most crucial component. But, you really are amazing! :-)