UN Convention on the Rights of Persons with Disabilities

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Mona Pereth
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01 Sep 2021, 11:56 pm

Yesterday on Twitter I came across a very interesting -- and potentially very useful -- thread about the United Nations Convention on the Rights of Persons with Disabilities (CRPD).

The Twitter thread is a series of tweets by Tania Melnyczuk, who leads the Autistic Strategies Network in South Africa.

Referencing the official CRPD Training Guide, Tania wrote:

Quote:
So, as a disabled people, we have certain rights; and if researchers and charity organisations are talking over us (or speaking FOR us, when we never asked them to), then they are acting out of line.

That is clarified in General comment No. 7 (2018) on the participation of persons with disabilities, including children with disabilities, through their representative organizations, in the implementation and monitoring of the Convention.

followed by a link to General comment No. 7 (2018) on the participation of persons with disabilities, including children with disabilities, through their representative organizations, in the implementation and monitoring of the Convention.

Tania goes on to say:

Quote:
The basic principle explained here is that organisations FOR people with disabilities are not the same as organisations OF people with disabilities. Organisations OF people with disabilities are ones which have more than 50% of people with that disability on their board.

...

Only organisations OF people with disabilities can speak ON BEHALF of people with disabilities.

After a few more tweets on that topic, Tania goes on to quote Article 1 of the CRPD itself. Tania wrote:

Quote:
It says, "The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity."

"Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others."

Later in the thread, she explains that it's a treaty violation for the autism scientific research agenda to be set by any organization that does not have at least 50% autistic people on its board of directors.

On to Article 2. Tania wrote:

Quote:
Article 2 of this treaty defines some of the terminology used in the treaty: 'Communication', 'Discrimination on the basis of disability' and 'Reasonable accommodation', for example.

Then, regarding Article 3, Tania wrote:

Quote:
Article 3 talks about the main points in the #CRPD. As you read these, remember that they apply to ALL disabilities, not just autism; but you can ask yourself:

"Do the autism scientists who sit on ethics committees even know the stuff in this treaty, that they are obliged to respect, because it was signed by their government? Have they ever read it? Do they realise what it means?"

Tania then quotes some of the principles of Article 3, including, among others she quotes:

Quote:
"Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;..."

"Equality of opportunity;..."

"Accessibility;..."

"Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities."

Tania comments:

Quote:
Do you think non-autistic autism researchers are adhering to these general principles in respect of their research on your disability? Do you think they understand the spirit that underlies the #CRPD and that Comment Note about representation?

Do you think these researchers know that the motto #NothingAboutUsWithoutUs is a cornerstone principle of the #CRPD?

Because if they know this, the autism researchers are deliberately and knowingly violating the #CRPD every time they decide on what to study instead of having actual disabled people playing a leading role in what to study.

If they DON'T know this, then they're just ignorantly ableist, and you can help them to get educated about your rights in terms of the #CRPD.

Here, Tania provides a link to this page on the website of the United Nations Office of the High Commissioner on Human Rights.

On to Article 4.

I won't quote what Tania says in detail here, but basically she says that if nonverbal autistic people can't communicate about their desired research priority, then the highest research priority needs to be to find ways to help nonspeaking autistic people learn to communicate in whatever language-based way they can, e.g. by reading, writing, typing, or pointing to letters, if they are physically unable to speak. And, in setting the research agenda on this question, scientists need to listen to those non-speaking autistic people who have already learned to communicate by typing etc.

EDIT: The above is part of a much longer Twitter thread that begins here, with the following by Tania:

Quote:
I am encouraging a boycott of autism research participation by autists and parents of autistic children, unless autistic people are involved in setting the goals of the studies. Don't participate just because it's about autism. The study design and ethics may be up to maggots.


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carlos55
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02 Sep 2021, 3:10 am

Mona Pereth wrote:
Yesterday on Twitter I came across a very interesting -- and potentially very useful -- thread about the United Nations Convention on the Rights of Persons with Disabilities (CRPD).

The Twitter thread is a series of tweets by Tania Melnyczuk, who leads the Autistic Strategies Network in South Africa.

Referencing the official CRPD Training Guide, Tania wrote:

Quote:
So, as a disabled people, we have certain rights; and if researchers and charity organisations are talking over us (or speaking FOR us, when we never asked them to), then they are acting out of line.

That is clarified in General comment No. 7 (2018) on the participation of persons with disabilities, including children with disabilities, through their representative organizations, in the implementation and monitoring of the Convention.

followed by a link to General comment No. 7 (2018) on the participation of persons with disabilities, including children with disabilities, through their representative organizations, in the implementation and monitoring of the Convention.

Tania goes on to say:

Quote:
The basic principle explained here is that organisations FOR people with disabilities are not the same as organisations OF people with disabilities. Organisations OF people with disabilities are ones which have more than 50% of people with that disability on their board.

...

Only organisations OF people with disabilities can speak ON BEHALF of people with disabilities.

After a few more tweets on that topic, Tania goes on to quote Article 1 of the CRPD itself. Tania wrote:

Quote:
It says, "The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity."

"Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others."

Later in the thread, she explains that it's a treaty violation for the autism scientific research agenda to be set by any organization that does not have at least 50% autistic people on its board of directors.

On to Article 2. Tania wrote:

Quote:
Article 2 of this treaty defines some of the terminology used in the treaty: 'Communication', 'Discrimination on the basis of disability' and 'Reasonable accommodation', for example.

Then, regarding Article 3, Tania wrote:

Quote:
Article 3 talks about the main points in the #CRPD. As you read these, remember that they apply to ALL disabilities, not just autism; but you can ask yourself:

"Do the autism scientists who sit on ethics committees even know the stuff in this treaty, that they are obliged to respect, because it was signed by their government? Have they ever read it? Do they realise what it means?"

Tania then quotes some of the principles of Article 3, including, among others she quotes:

Quote:
"Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;..."

"Equality of opportunity;..."

"Accessibility;..."

"Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities."

Tania comments:

Quote:
Do you think non-autistic autism researchers are adhering to these general principles in respect of their research on your disability? Do you think they understand the spirit that underlies the #CRPD and that Comment Note about representation?

Do you think these researchers know that the motto #NothingAboutUsWithoutUs is a cornerstone principle of the #CRPD?

Because if they know this, the autism researchers are deliberately and knowingly violating the #CRPD every time they decide on what to study instead of having actual disabled people playing a leading role in what to study.

If they DON'T know this, then they're just ignorantly ableist, and you can help them to get educated about your rights in terms of the #CRPD.

Here, Tania provides a link to this page on the website of the United Nations Office of the High Commissioner on Human Rights.

On to Article 4.

I won't quote what Tania says in detail here, but basically she says that if nonverbal autistic people can't communicate about their desired research priority, then the highest research priority needs to be to find ways to help nonspeaking autistic people learn to communicate in whatever language-based way they can, e.g. by reading, writing, typing, or pointing to letters, if they are physically unable to speak. And, in setting the research agenda on this question, scientists need to listen to those non-speaking autistic people who have already learned to communicate by typing etc.

EDIT: The above is part of a much longer Twitter thread that begins here, with the following by Tania:

Quote:
I am encouraging a boycott of autism research participation by autists and parents of autistic children, unless autistic people are involved in setting the goals of the studies. Don't participate just because it's about autism. The study design and ethics may be up to maggots.


No doubt when she means “autistic people” she means ND advocates which isn’t the same.

Probably the type of person that is unable to enjoy her life as an autistic person but wants to thwart medical research that has the potential to help others worse off for her own personal gain.

I haven’t the time or the expertise to read legal terminology I suspect neither is the Twitter author.

Fortunately I know these UN laws are deliberately written with multiple loopholes and usually contradict each other.

Most research organizations are private drug companies with ambiguous mission statements that can be interpreted in multiple ways or don’t specify “autism” but rather “developmental disorders” which is a big loophole.

Also autism itself is ambiguous and not biologically specified.

Any potential employee that has beliefs against the company mission statement would potentially be not employed at the interview stage.

Imagine the job interview LOL, :-

“do you know what we do here at abc biotech?”

“yes you research into treatments for developmental disorders something I’m against”

“ so what do you expect to do here if employed?”

“Nothing just get in the way” :D


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