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Subject: [DCHAS-L] symposium on teaching students with disabilities this Saturday.

Date: Nov 6, 2023 01:57 UTC

Author: Patricia Redden <predden**At_Symbol_Here**SAINTPETERS.EDU>

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Subject: Re: [DCHAS-L] SDS system

Date: Nov 6, 2023 14:47 UTC

Author: Jeffrey Lewin <jclewin**At_Symbol_Here**MTU.EDU>

From: Jonathan Klane <jklane1**At_Symbol_Here**ASU.EDU>

Subject: Re: [DCHAS-L] Question??

Date: Nov 6, 2023 04:28 UTC

Reply-To: ACS Division of Chemical Health and Safety <DCHAS-L**At_Symbol_Here**Princeton.EDU>

Message-ID: <CANkUwAoEv3D9REReYhBKvVv+rnEKOEuoQ1ttMgFDs_-y9EH0sw**At_Symbol_Here**mail.gmail.com>

In-Reply-To: <ACF0E268-4A97-47AA-BE2F-8B203B51CF85**At_Symbol_Here**gmail.com>

Demystify: 
Hi all,

My appreciation to all who've contributed to this conversation so far.  I'll add first person experiences to it, as a son, father, and myself.

My mom was deaf without her hearing aid(s).  Thankfully her aids didn't go on the fritz often.  We used a small dry erase board then.  She (and we) used the phrase "hard of hearing" for her condition.  It was part of her but also just a small part of her as a person.  She had to drop out of college and decades later she had to stop going to symphony. The quote that comes to mind for my mom is by Helen Keller who said, "Being blind separates me from things. Being deaf separates me from people". 

In college (40 years ago at UMass) I was on the extension of the deaf floor where those on their end of the floor had to take lessons in American Sign Language (ASL) regardless of hearing abilities.  There weren't enough deaf or hearing impaired students so other non-hearing impaired students also lived on the floor. We learned to use whatever language and descriptions of themselves they each preferred. It was a nice time with some great friends.

I became familiar with the deaf community as a result and support their approaches and preferences for how to refer to them.

My older son, Evan, had profound special needs. He had cerebral palsy (CP) and epilepsy - both at the severe ends of their ranges.  He was disabled, though we only used that term as needed mostly for qualifying purposes. As an ironic aside, he was born the year that the ADA went into effect.  I had a highlighted copy of it in Evan's handicapped accessible van which did come in handy on occasion.

We talked quite openly about his conditions. His mom fashioned Bert and Ernie dolls with a g-tube and a trach to help educate his classmates from Kindergarten about Evan's eating and breathing tubes. It worked quite well.  We always welcomed questions, especially from curious children.

Evan outlived every prediction of his imminent death ... except the final one which was inevitable. His mom wrote a lovely obituary which so many people from his high school responded to. They all said how much of a positive influence he had on them - his fellow classmates and a custodian, too. 

This was a boy (who became a man) who couldn't speak or move willingly.  He was such a part of the community.  Yes, he was disabled and moved around in a wheelchair which his classmates fought over who got the honor of pushing him each day. We've many fond memories of course.

And me?  As some of you know, two and a half years ago I was diagnosed as being autistic. That's how I refer to myself - I'm autistic. It is me.  I'm inseparable from it and it from me.  Every single thing I do is processed by my autistic brain (such as this email). If you have questions, feel free to reach out privately - I'm happy to help others understand autism better.

I know others who identify as having/being an aspie (short for Aspurger's), have autism, on the spectrum, etc.  All are fine of course. What matters is how I can support them including using their terms for themselves. There are several good resources and research papers on better language to use in describing autism and autistics.  Much is focused on not medicalizing or pathologizing it or them.

Like Evan's mom and me with Evan, parents of children might prefer to say something like "a child with autism" and focus on their child first and their child's condition second. It's their choice on how best to represent their child.

There's a saying that bears on all this.  "Nothing about us, without us."  Meaning if your org is going to draft policies, learning, inclusion efforts, etc. that has to do with autism, the org should always involve autistics in drafting it.

At CSHEMA's annual conference this year I presented on what it's like being autistic while working in EHSR.  And AIHA just accepted my proposal to give it at AIHA Connect in Columbus this coming year.  Feel free to attend if you'll be there. 

Again, I'll offer to happily try to answer any kind questions.  My goal is to reduce the double-empathy problem.  I'll end with one other well-known quote. "If you know one autistic person, you know one autistic person."  Thus, the spectrum descriptor.  Each of us is a different person.

All my autistic best,
Jon

Jonathan Klane, M.S.Ed., CIH, CSP, CHMM, CIT
Senior Safety Editor, Lab Manager Magazine

PhD candidate, Human + Social Dimensions of Science + Technology
College of Global Futures
School for the Future of Innovation in Society


On Fri, Nov 3, 2023 at 2:21 PM Doug Walters <waltersdbw**At_Symbol_Here**gmail.com> wrote:
Thanks Jack,

Good complete clarification of the subject.

Doug



> On Nov 3, 2023, at 12:16 PM, Ralph Stuart <membership**At_Symbol_Here**DCHAS.ORG> wrote:
>
> Hi all,
>
> I wanted to forward on this message with a thoughtful question from Doug. I
> apologize to Doug for the delay, but it's a topic I have some familiarity
> with and wanted to take the time to pull together some good resources.
>
> What Doug asked about ("people with disabilities" vs. "autistic person")
> goes to the heart of the discussion of "person-first language" versus
> "identity-first language." I'll link to some good articles exploring this at
> the end of my message, but to summarize, person-first language uses phrasing
> to emphasize someone's personhood separate from their identity, disorder,
> disability, etc., while identity-first language emphasizes a trait being
> intrinsic to a person. Historically, identity-first language has been much
> more prevalent, but in the latter half of the 1900s there was a push to
> start using person-first language. Many people with disabilities felt that
> identity-first language contributed to them being reduced to nothing more
> than their disability, that people thought of them as "disabled" and nothing
> else. The NIH gives the example of people with AIDS in the 1980s: "We
> condemn attempts to label us as 'victims,' a term that implies defeat, and
> we are only occasionally 'patients,' a term that implies passivity,
> helplessness, and dependence upon the care of others. We are 'People With
> AIDS.'"
>
> On the flip side of this, however, there are some communities that feel
> person-first language implies that they can be separated from their
> condition, whereas they view it as an intrinsic part of who they are. In
> some cases, they feel pride in their identity, and feel that person-first
> language implies something negative about it. One prominent example of this
> is the Deaf community, who prefer to be referred to as deaf or
> hard-of-hearing rather than "person with hearing loss" or something similar.
> This is rooted in the Deaf community having their own language (American
> Sign Language) and culture. Within the autistic community there is more of a
> divide. Many autistic people prefer identity-first language as they view
> autism as being more of a different way of experiencing the world than a
> disability. With that said, there are many, including many parents of
> autistic children, who advocate for person-first language.
>
> Every article I read discusses that there is always, within every community,
> some degree of debate, and everyone has personal preferences. The key, then,
> is to think carefully about the intention and implications of the language
> you use: generally speaking, if you come from a place of trying to be kind
> and respectful to others, people will reflect that back if they object to
> the terminology you have used, and it's important to be open to changing
> based on new information and the preferences of the person you're speaking
> with. I would say in general, it's best to avoid phrasing that reduces
> someone to a single word (e.g., "a schizophrenic" vs. "person with
> schizophrenia"), implies suffering (e.g., "AIDS victim" vs. "person with
> AIDS"), or attributes negative connotations to objects or practices that
> help them (e.g., "wheelchair bound" vs. "wheelchair user").
>
> I hope this helps, and I look forward to any discussion on the topic. As
> promised, here are a few good articles:
> NIH:
> https:​//urldefense.com/v3/__https://www.nih.gov/about-nih/what-we-do/science-health-public-trust/perspec__;!!IKRxdwAv5BmarQ!fYqO5WUhtl-GyWE_CYE14V6H7nzev_sItNUITf8FOcXmbSvuagAwfOZRjbE-hr81Jj0Po__D8br9EFX4DN-Z-vg$
> tives/writing-respectfully-person-first-identity-first-language
> Association of Health Care Journalists:
> https:​//urldefense.com/v3/__https://healthjournalism.org/blog/2019/07/identity-first-vs-person-first-lan__;!!IKRxdwAv5BmarQ!fYqO5WUhtl-GyWE_CYE14V6H7nzev_sItNUITf8FOcXmbSvuagAwfOZRjbE-hr81Jj0Po__D8br9EFX49eC7yDU$
> guage-is-an-important-distinction/
> Autistic Self-Advocacy Network:
> https://urldefense.com/v3/__https://autisticadvocacy.org/about-asan/identity-first-language/__;!!IKRxdwAv5BmarQ!fYqO5WUhtl-GyWE_CYE14V6H7nzev_sItNUITf8FOcXmbSvuagAwfOZRjbE-hr81Jj0Po__D8br9EFX4rTmTwP8$
>
> Sincerely,
>
> Jack Reidy (he/him)
> Chair of DCHAS Membership Committee
> Asst. Chemical Hygiene Officer, Stanford University
> Tel: (650) 497-7614
>
> I acknowledge that the land on which I live and work is the ancestral and
> unceded land of the Muwekma Ohlone Tribe. As an uninvited guest on these
> lands, I am a beneficiary of the ongoing displacement of the Ohlone people.
> I pay my respects to the Native peoples, past and present.
>
>
>
> -----Original Message-----
> From: Doug Walters <waltersdbw**At_Symbol_Here**gmail.com>
> Sent: Wednesday, October 25, 2023 10:25 AM
> To: DCHAS-L**At_Symbol_Here**Princeton.EDU
> Subject: Question??
>
> Hi Pat,
>
> Question—re: attachment from C&EN (Oct. 16, 2023, p 21)
>
> I understand , as C&EN illustrates, the proper term is" people with
> disabilities," etc.
>
> But I do not understand the sentence above what states the proper usage term
> is "autistic person."
>
> Can  you enlighten me?  Am I misreading what they printed?
>
> Thanks,
>
> Doug
>
>
> ---
> For more information about the DCHAS-L e-mail list, contact the Divisional
> membership chair at membership**At_Symbol_Here**dchas.org
>
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> For more information about the DCHAS-L e-mail list, contact the Divisional membership chair at membership**At_Symbol_Here**dchas.org
> <CENScan.jpeg>

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