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Tuesday, July 28, 2015

Where is Sharisa Joy Kochmeister? The War for Safety, Personhood, and Competence

Sharisa Kochmeister on her College Graduation Day
credit Facebook
The most terrifying thing that can possibly happen to a nonspeaking disabled adult happened to a dear colleague and online friend of mine, Sharisa Joy Kochmeister. She was taken against her will, placed first in a nursing home for seniors with dementia, and is now in a "host home" in an undisclosed location, the supports she needed to communicate were taken away from her, her family, concerned friends, colleagues, even her own doctor are being kept from seeing her.  In one series of unfortunate events, Sharisa is snatched away and her human rights have been snatched from her. Jefferson County, Colorado assumed guardianship of Sharisa, a brilliant, college educated autistic activist and former president of AUTCOM, The Autism National Committee. They have declared Sharisa, who when given her keyboard and safety to communicate freely tested at least 2 standard deviations above the mean, an  IQ of 47. They say she is unwilling to speak to them, therefore they reject her competence. She is not communicating, therefore she is not intelligent or competent? My God, would you speak to these creatures who rip every anchor and support you have away from you while you are in the midst of a serious health crisis, place you in a nursing home for elderly dementia patients, and then declare you incompetent? What on earth could she possibly type to them? A scream?

Sharisa used to blog at My Surreal Life. This is how she describes herself there:

"I'm 31 now, have autism, cerebral palsy, epilepsy, dyspraxia and a genius IQ; and communicate almost entirely via keyboards. I am former President of Autcom, on the Panel of Advisors on the Spectrum for the Autism Society of America; publisher and managing editor in chief and writer for "The Voices and Choices of Autism" and so on, and etc. I am also a university graduate with a dual degree in Sociology & Psychology with honors and awards; a consultant, an advocate, and a FABULOUS FRIEND! ;-)"

The tragic story of how Sharisa disappeared and is now a prisoner of Jefferson County  is succinctly stated in the Denver Post Op-Ed: Meyer: An outrageous human services case in Jefferson County

Sharisa Joy Kochmeister credit Facebook
I want to scream at them. This is like a chapter in a horror story. Now no friend or colleague is able to check her welfare nor is "allowed" to visit where she is. She has been left without communication supports. We know that she wasn't placed in the correct environment and we know Jefferson County Adult services is still in violation of the Olmstead decision and the Americans with Disabilities Act by holding her against her will. By removing the supports she needs to communicate  they have violated her right to self determination. That is how much power a state agency has over disabled people who need AAC to communicate. In one heartbeat, they can make your loved ones disappear in a quagmire of bureaucracy and cruelty and snatch every right a disabled adult has to make their own decisions, see their own friends and colleagues, and live their own autonomous lives. The erasure of everything Sharisa has achieved and what this must be doing to her mental health is devastating me. I need to make this clear to everyone. So I'm going to repeat what is happening to Sharisa and state again that this is happening over and over to disabled adults across disability constellations who need supports to communicate in crisis situations:

The following violations of Sharisa's rights under Olmstead and ADA took place:

Sharisa typing on her speech device
credit Facebook
1. Sharisa's communication device and supports were removed and she was therefore devoiced and unable to self advocate
2. She was removed to a nursing home for seniors with dementia, an inappropriate placement for her disability and a violation of the Olmstead Decision
3. Jefferson County Adult Services tested her intelligence without her speech support, therefore their finding of her IQ to be 47 is not valid as there is ample documented and video evidence to support she is an independent typer and a college graduate.
4. Jefferson County cannot simply seize control of a person competent to self advocate after blocking the disabled person's ability to communicate without that person's consent regardless of degree of disability.
4. Jefferson County is keeping Sharisa isolated not only from the supposed 'harmful' parents but also from everyone including advocates wishing to do wellness checks on her condition and her own doctor. This is not okay and is a red flag that Sharisa needs her own legal representation not a court appointed advocate that presumes she is incompetent and therefore erase her from the defense of her own right to self advocacy and self determination. Seclusion of disabled people is against the law and a violation of basic human rights.

When did we cease to live in a democracy? When did those agencies whose purpose is to protect become jailers and secret police, denying even a disabled adult's own medical professionals the right to insure their safety in this new setting? Who will be next? Because no matter how much wealth we have, no matter what power we think we wield, this can happen to any of our nonspeaking adult offspring at any stage of their lives and we their parents are powerless to stop it. One misunderstood gesture, one bitter or ableist staff person, any case worker who secretly refuses to believe that nonspeaking adults are competent, and they can take our loved ones away and we will never see them again.

This is a war for the personhood of disabled adults.  This is happening all over our country. Recall the case of Abreham Zemedagegehu, a deaf U.S. Citizen jailed for 6 weeks for a crime he did not commit, mistreated and left voiceless because the police refused to provide him with the communication supports he needed. He was Black and homeless so he was therefore guilty?

 While everyone with privilege is celebrating ADA's 25th anniversary, they also need to be fighting for our people. What benefit is privilege if it cannot save lives?

Beware the accusation of Munchausen by proxy: This accusation is at the center of another high profile case in which a young woman with mitochondrial disease was imprisoned in a Massachusetts hospital, denied treatment for 16 months, and the hospital and the CPS of Massachusetts is responsible for her health declining such that she is now confined to a wheelchair and may never recover her health completely. The story of Justina Pelletier is terrifying:  http://www.foxnews.com/politics/2014/06/12/massachusetts-dcf-files-motion-agreeing-justina-pelletier-should-be-returned-to/
The Munchausen by proxy parade of destroyed families and tragedies is endless. Jenny Lockley, the mother of an autistic young student, had her son's formal diagnosis rejected by a school that simply did not wish to provide him services and their insistence that she was "just trying to get attention" nearly destroyed her family and her life:  http://www.dailymail.co.uk/news/article-2554867/The-schools-spy-Munchausen-Mums-Teachers-accuse-lying-childrens-autism-attention.html
Here is the story of Karen, and how she and her husband lost two children to the lie of Munchausen by proxy: http://www.theguardian.com/uk/2004/feb/01/children.health

Sharisa typing with her father seated on her left. Sharisa
was featured in the groundbreaking Autism documentary
 "Loving Lampposts" credit Loving Lampposts
Regardless of degree of disability every disabled person has a right to self determination: the entire victory in the landmark case of Jenny Hatch, is that a disabled adult, regardless of degree of disability, has a legal right to decide where they want to live.  http://www.washingtonpost.com/local/woman-with-down-syndrome-prevails-over-parents-in-guardianship-case/2013/08/02/4aec4692-fae3-11e2-9bde-7ddaa186b751_story.html
If you take away a person's wheelchair you've deprived them of their mobility. If you snatch away a person's certified ASL interpreter, you have devoiced them. If you take away a nonspeaking disabled person's AAC support you have devoiced them and taken away their ability to advocate for themselves. Removing a critical support from a disabled person is against the ADA and might even be a legal assault on their person.

 I am waiting for a statement of outrage from more disability rights organizations on this. From the onset, I've been waiting for a proper petition, a form email and a list addresses to write to those in charge of adult services in Colorado. Sharisa needs her voice back. She needs her right to decide where she lives and how she lives back. Sharisa is one of the women who led the fight for the presumption of competence of nonspeaking autistic people. She doesn't deserve this degradation and isolation, nor this abandonment from the community she fought for.

All of this hoopla about the 25th anniversary of the Americans with Disabilities Act means zip if any human services entity can get away with devoicing, snatching guardianship, and obliterating all the self advocacy and self determination of a nonspeaking disabled adult. Is this the world we want for our children? I for one don't. This nightmare straight out of a Lemony Snicket novel needs to end.


Where is Sharisa Kochmeister?
Colorado: Give Sharisa her life back.

Autism Community. Fight for Sharisa. Write the Governor of Colorado, Human Services, anybody. Email Colorado law makers.

Fight. She fought for us. Now it is our turn.

UPDATE: 
There is a new petition for Sharisa on change.org: http://tinyurl.com/pqzznul
Sharisa is in what is labeled in Colorado a "host home" facility now in an undisclosed location. To our knowledge she is still being denied any assistive technology communication supports. As soon as we have a postal address or email where we can sent letters or email to her I will post it here. She needs our words of support to tell her she's not alone. Sharisa life is very restricted and now and going from a free life to the this one must be traumatic for her. Others are also blogging about her crisis situation. I'll post those effortsin the reference list.

References:
Sharisa's storyhttp://www.denverpost.com/opinion/ci_28533686/meyer-an-outrageous-human-services-case-jefferson-county
The Loving Lampposts Documentary featuring her: http://lovinglamppostsmovie.com/
What is the Americans with Disabilities Act (ADA)? https://adata.org/learn-about-ada
What is tIn Olmstead v. L.C., 527 U.S. 581, 119 S.Ct. 2176 (1999) ("the Olmstead decision"),? http://www.ada.gov/olmstead/

On Denial of Communication Supports for the Disabled 
Abreham Zemedagegehu's Story : http://tinyurl.com/qfggb3a
New: Amy Sequeniza for the Autism Women's Network: 
http://autismwomensnetwork.org/sharisa-joy-kochmeister-give-her-back-the-right-to-communcate/
Deaf couple denied interpreter fo birth of baby:
 http://www.theguardian.com/society/2014/jan/19/deaf-couple-lack-interpreter-birth-university-college-hospital-london
Deaf Mom Sues for the Right to Have Sign Language Support in Delivery Room:
http://www.miamiherald.com/news/article1984639.html

On seizing guardianship of children and adults using the Munchausen by proxy accusation: 
Justina Pelletier's Story : http://www.foxnews.com/politics/2014/06/12/massachusetts-dcf-files-motion-agreeing-justina-pelletier-should-be-returned-to/
Jenny Lockley's Story : http://www.dailymail.co.uk/news/article-2554867/The-schools-spy-Munchausen-Mums-Teachers-accuse-lying-childrens-autism-attention.html

On the Right of Neurodivergent individuals to self determination in  deciding where they live:
Jenny Hatch's Story:  http://www.washingtonpost.com/local/woman-with-down-syndrome-prevails-over-parents-in-guardianship-case/2013/08/02/4aec4692-fae3-11e2-9bde-7ddaa186b751_story.html
And herehttp://www.washingtonpost.com/local/virginia-woman-with-down-syndrome-becomes-hero-to-the-disabled/2013/08/17/0da21766-062e-11e3-a07f-49ddc7417125_story.html

24 comments:

  1. You probably already did this, but, if not, call your state protection and advocacy system now. Fixing this kind of thing, without charge to you or your friend, is their job. The lawyers there would be really interested to hear about this.

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  2. I forgot to include their url. Here it is: https://disabilitylawco.org/we-may-be-able-help-you
    Seriously, if you have not already done this, the federal government set up and pays these people to deal with exactly this kind of thing. They will work free of charge, and they will put up a fight over someone getting disappeared.

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  3. Kerima - thank you for posting this important information. It is 10 PM here in Jerusalem so I hope I can post a more detailed comment tomorrow.

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  4. This is horrible. I am not from the USA, but you have my support.

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    Replies
    1. Thank you Hana. We are trying to make this a very public story, It means a great deal when everyone cares.

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  5. This is reprehensible. IS there no one who can force the state to defend themselves in this?

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    1. The Colorado Developmental Disabilities Coalition and The Colorado Developmental Disabilities Council are fighting as are a great many activists. Our voices are not being heard.

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    2. There is so much going on behind the scenes not just in Colorado but everywhere that it is overwhelming. I'll trying to post updates as soon as the dust clears a bit. THANK YOU ALL for sharing this and making Sharisa matter! Maybe this will result in things like this happening less. It is becoming rampant

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  6. Sharing. Thank you Kerima as always for saying what must be heard. <3

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  7. This is like the National Defense Authorization Act for neurodivergents...

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  8. To the extent that you can PLEASE keep us posted on what is happening. I have always been aware that having a natural (if speech-therapized) voice is one of my most significant weapons/tools in the world. If I don't use it to help, that's wrong.

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  9. I put this out on Facebook today and only got 5 signatures, with only two shares. Frightening that this could be happening to someone like Sharisa, a progressive,under a progressive regime.
    https://www.change.org/p/the-un-committee-on-human-rights-we-demand-to-recognize-psychiatric-coercion-as-the-crime-against-humanity-and-on-this-basis-to-exclude-it-from-acceptable-in-the-human-community-measures?recruiter=352938876&utm_campaign=signature_receipt_fb_dialog&utm_medium=facebook&utm_source=share_petition

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  10. Kerima, I'm working on a post/memo regarding Colorado law and federal law in this matter. With your permission, I would like to cite this piece - may I do so, and if so, how would you like to be credited?

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    Replies
    1. If this helps Sharisa's cause feel free to cite it. Kerima Cevik, disability rights activist, mother of a nonspeaking autistic pre-teen.

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  11. I'm not sure I understand. Who took her and from where and why? It sounds horrific.

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  12. Do you think there is someone specific who could be pressured here? Tumblr is awake to this situation, but Tumblr has the attention span of a toddler who just stole her mom's latte. It would have to be done quickly.

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  13. Specifics on who and why she was taken are in the Denver Post Op Ed and in the blogpost. After this was written, many disability rights organizations became aware of Sharisa's crisis and they are working together to help her. What concerned Tumblr members can do is follow AutCom, The Autism Society, ASAN, AWN, and other orgs who are coordinating online action and amplify their efforts at #FreeSharisa

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  14. Hi Kerima, I work with a small group of people mobilizing radical activists in Jefferson County. Sharisa has our full support! Please let me know how we can help.

    I also work with the Denver branch of the Icarus Project, a radical mental health network. We extend our support to Sharisa as well! We are a group that values neurodiversity, please let me know if you need any support from us or if you think it would be appropriate for us to issue or cosign any statements.

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    Replies
    1. Thanks so much for the offer Kae. I will reach out to people and see what they are doing

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    2. I have an answer. Kae how can I reach you by email?

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  15. Hello. Sorry. I've just found this story. I know it's years late. Is Sharisa out now? Is she safe? What happened.

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    1. I reached out to people in her home state. My understanding from them is she is now in an appropriate setting, has access to communication support, and is recovering from trauma but in good health. Her parents currently do not have guardianship of her.

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  16. I'm not sure if my last comment sent. What happened? Is she okay now? Is she out?

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  17. I had heard from someone who knew the case that the father had been abusive to her. To return her to him would have been a problem and dangerous to her. The question now is whether she is able to communicate, whether her communication skills were ever as they were shown with her father as her facilitator. This is always an issue when there is just a single facilitator. There should be multiple paths for those who are disabled to be able to communicate since it is entirely possible that a facilitator becomes a captor.

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