ASAN founder and former president, until 2017, Ari Ne'eman was one of 63 nominees confirmed in 2010 after anonymous holds were released.
The hold releases likely followed individual nominee meetings with Senators to address concerns that somehow never were addressed in committee confirmation hearings.
In this link that died by 2015
http://www.examiner.com/article/first-ever-autistic-nominee-confirmed-to-national-council-on-disability
Earlier today, after several months' delay due to an anonymous hold placed by one or more Senators, Autistic Self-Advocacy Network president Ari Ne'eman was unanimously confirmed to the National Council on Disability, along with at least 63 other nominations that had holds placed on them. Out of all of President Obama's nominees for the National Council on Disability, Ne'eman was the only one who was not immediately confirmed to his appointment, one of the youngest ever to be appointed to a presidential advisory council, and the first diagnosed autistic to be appointed to the NCD. The National Council on Disability makes recommendations to the President and Congress on disability issues and policies, and it has been speculated by some that Ne'eman's insistence that autism should be accepted and embraced as a part of the individual's identity rather than viewed as a "disease" to be "cured" was the impetus behind the anonymous hold, which was lifted just as anonymously. Others have noted that Autism Speaks has been rather vocal in their opposition to his appointment, and their founders, Bob and Suzanne Wright, have been significant campaign contributors for several years to at least 5 US Senators. It has also been confirmed that Senator Claire McCaskill, D-Mo, secured enough votes to change the Senate rules so that anonymous holds are now no longer permitted. Should this occur in the future, it will be known exactly who has placed the hold, and the public will be able to demand answers.
where the content had been posted by
Marc Rosen
Long Island Autism Examiner
Marc Rosen is a Dowling College graduate, autistic rights advocate, and autistic. His first article back in 2007, about how autistic people don't want to be "normal", illustrated seldom-discussed prejudices which began his fight for autistic rights. Marc is devoted to ensuring a better future for autistic people through his work on Examiner.com, as well as by providing educational advocacy services in the greater Long Island area. He also makes various speaking appearances to talk about the concerns of the autistic population.
Rosen speculated the founders of Autism Speaks had donated to 5 (unnamed by Rosen) Senators. Rosen speculated that one of the 5 senators could have placed the hold. Concerns over what 'cure' meant (a broad or narrow concept) by applying new technologies from stem cell research may have motivated the hold and the Senator (former Senator Claire McCaskill), who by whipping up the votes to eliminate the legislative tactic, may have tacitly revealed she placed the hold. The prior relationship between Claire McCaskill and Michael J Fox, that resulted in Fox's consent to use video of himself in a campaign ad testifying to demand more money for stem cell research on neurological conditions, may have been the bigger 'influencer' in placing the hold, if former Senator Claire McCaskill indeed placed it, as well as preventing future senators from having the anonymous hold option.
The confirmations come after news earlier this week that Sen. Claire McCaskill, D-Mo., secured the votes to change the Senate rules to bar holds from being placed anonymously.
Any campaign donor influence from Bob and Suzanne Wright, founders of Autism Speaks with CEO pay from NBC Universal before the Comcast merger in 2010, was likely a lesser 'influencer.'
Ne'eman is in 2019 at work on a book about the history of disability in America as well as working for the ACLU and @mysupportworks a private business (twitter account @mysupportworks) that expedites Medicaid waivers to pay for LTSS in HCBS in California,
New York,
and Virginia
only.
In New York and Virginia, probably to comply with state or federal medicaid regulations, guardians for the person with a disability are allowed to manage the mysupport.com user account to communicate with support workers.
If a person with a disability needs a guardian/caregiver to manage the support services that person with a disability is an individual manifestation of what the NYU 'Ransom Notes' ad campaign was marketing its services based on. The NYU Child Study Center "Ransom Notes" ad campaign was based on parental fears of who their child with a disability could 'grow up' into - life with a disability severe enough that they couldn't 'take care of' themselves. Not finding a way to continue advocating, perhaps by mysupport.com donations of some of its profits to nonprofit (NGO) self-advocacy organizations to help advocate for a reintroduced CLASS Act or Disability Integration Act with regulations that allow inclusion in medicaid eligibility for individuals without 'intense needs' (formerly known as 'low functioning') such as individuals with situated functioning (formerly known as 'higher functioning') issues is almost as unethical, on the part of mysupport.com, as the NYU "Ransom Notes' marketing campaign.
No other states than California, New York and Virginia have contracted with @mysupportworks to solve the 'institutional bias' problem that the CLASS Act fixed nationally, before its 2011 repeal, and the Disability Integration Act, if reintroduced, could fix for all Americans with disabilities poor enough and impaired severely enough to qualify for Medicaid.
In August 2020 Ari Ne'eman and several founding partners of mysupportworks sold its platform to Rise Services. The DSP (direct service provider) and Medicaid beneficiary matching service mysupportworks changed its name to mysupport.com. Less student loan debt for Ari to pay off for his PhD program if tuition wasn't privately paid by scholarships and personal savings. Depending on Rise Services qualifying for a Medicaid Home care waiver in the state Ari and his spouse live in the platform sale possibly allows his spouse Rabbi Ruti Regan to have supports, as parents with disabilities, raising their child together.
Now former Senator Claire McCaskill D-MO, who lost her reelection to R-MO Josh Hawley (former Attorney General) in Nov 2018 likely placed the anonymous hold and vote-whipping to change the rule to eliminate the procedural tactic to promote open and accountable governance procedures (political populism) was likely a face-saving gesture. New Senator Josh Hawley (R-MO) was able to defeat Claire McCaskill despite his AG record of joining a multi-state lawsuit seeking to overturn the ACA ban on pre-existing condition exclusions after the 2017 #Trumptaxscam repealed the tax penalty for not buying a qualified health insurance policy with or without an APTC (subsidy) on private, state or federal exchanges.
By the end of 2018 a federal District Court declared the ACA unconstitutional. Appeals up the federal court system could overturn the ACA and render over 30 million more people as uninsured as they were before their enrollments since mostly 2013. A supreme court decision, on a case orally argued Nov 10, 2020, was released in June 2021 that rejected the case for lack of standing of the plaintiff. The ACA is still vulnerable to another challenge if plaintiff lawyers can shop for another plaintiff with standing in a jurisdiction with a corporate-friendly judge.
Originally posted at this link as dead as 2018 will be as it ends
http://www.nbcnews.com/id/15408508/
and retrieved at this link that also no longer links to the original article I again 'bore' anyone reading this blog post with a copy and paste of content that formerly loaded. "Anything posted on the internet" is only "online forever" if someone else saved the content offline and re-published the content somewhere else.
Limbaugh mocks Michael J. Fox political ad
Conservative talk show host accuses actor of faking Parkinson's disease
By David Montgomery
The Washington Post
Updated: 2:05 a.m. ET Oct 25, 2006
Possibly worse than making fun of someone's disability is saying that it's imaginary. That is not to mock someone's body, but to challenge a person's guts, integrity, sanity.
To Rush Limbaugh on Monday, Michael J. Fox looked like a faker. The actor, who suffers from Parkinson's disease, has done a series of political ads supporting candidates who favor stem cell research, including Maryland Democrat Ben Cardin, who is running against Republican Michael Steele for the Senate seat being vacated by Paul Sarbanes.
"He is exaggerating the effects of the disease," Limbaugh told listeners. "He's moving all around and shaking and it's purely an act. . . . This is really shameless of Michael J. Fox. Either he didn't take his medication or he's acting."
Limbaugh, whose syndicated radio program has a weekly audience of about 10 million, was reacting to Fox's appearance in another one of the spots, for Missouri Democrat Claire McCaskill, running against Republican Sen. James M. Talent.
Actor Michael J. Fox made an ad in the 2006 election cycle for Claire McCaskill and also made ads in the 2008 election cycle for Congressmember and since 2016 US Senator Tammy Duckworth (D-IL).
Temporarily stopping medications to show the symptoms (or traits) of Parkinson's Disease as a messaging tactic, to advocate the election of legislators/lawmakers/'politicians' who will vote to appropriate and authorize more funding to solve the individual problems that individuals need the 'role of government' to help solve, is what Republican syndicated radio show creator Rush Limbaugh (Limberger as his politics stink like that type of cheese) mocked in order to persuade his radio listeners to vote for more Republicans in local, state and mostly federal elections.
Parkinson's Disease can be treated with medications that people suffering from it need insurance to help pay for as well as future treatments that relieve symptoms/traits long enough that a person starts to regard themselves (and others regard them) as 'cured.'
Ari Ne'eman built his activism career pushing back against 'worst case scenario' messaging tactics to socially include people with the disability of autism. Michael J Fox stopping his medications to show the worst symptoms/traits of Parkinson's disease were 'worst case scenario' messaging tactics to advocate for help paying the costs of living with lifelong chronic neurological conditions.
What are called "stereotypes" of autism are actually autistics left behind in the pace of positive social change that has not been equitable enough to give the most impaired people the help they need. The problem with the "social constructionist" model of disability preference over the medical model of disability shows in the unequal pace of positive social change that has resulted in autistics left behind in progress toward inclusion disrupting 1 autistic-operated self advocacy organization (aagw.net).
(restricted group readers need yahoo account and list serve membership to read private content start of thread in image below)
Autistics Association of Greater Washington (formerly called the Asperger Adults of Greater Washington aagw.net) is one of many organizations that participated in a 2016 National Summit of Autistic-Operated Self-Advocacy Organizations. It was held on November 20-21, 2016 at 2013 H St, NW (former HQ of autisticadvocacy.org ASAN before they moved to 1010 VT ave, NW suite 618).
The organizations that accepted AAGW.net leader invitations to participate in the Summit focus too much on individual, self-paced, improvement and not enough on systemic improvement (demands for more money to pay the costs that individuals cannot pay themselves) to do more good for more individuals more quickly.
All the person 'disrupting' (showing the inequality of progress toward inclusion leading the person left behind to 'lash out' desperately) was to be asked introductory 'small talk'/'getting to know you' questions that didn't relate to paid work.
From: Tyrone [redacted by post author]
<[email address redacted by post author]>
Date: Mon Mar 18, 2013 1;25 PM
Subject: Re: [AS] Re: Tonight’s Drama
A concern I have is people PREJUDGING others. In the DC area people typically ask questions such as what do you do for work. I get asked where do you work. Is it too much for ask for people not to make assumptions, such as inquiring, bugging me about where I work? Also please do not Assume, I go to the meetings looking for a date. These are my concerns and I would appreciate it, if you guys would show respect. There were two people on the last Sat. meeting that really prejudge me. I expect for this behavior stop, before I call names out. Thank you.
Tyrone [redacted]
The person 'disrupting' by 'raising their voice' also stated a need for transportation assistance to see a romantic interest ("girlfriend"). The desperation led to the person being escorted out of the aagw.net meeting venue (Teaism restaurant that allows use of space in return for attendees creating an increase in food sales revenue for 2 hours). Rustedaspie, the author of this post, witnessed the March 13, 2013 meeting disruption and writes from personal memory of the experience supported by relevant list serve posts (anonymized for confidentiality).
Subject: [AS] Tonight's Drama
To: dcaspie@yahoogroups.com
Date: Saturday, March 16, 2013, 10:08 PM
In the roughly four and a half years I have been attending AAGW support group meetings I have found our group to be a wonderful resource for sharing the highs and lows of being an Aspie. I've found it to be a wonderfully supportive resource and I hope others have seen it in the same light.
Tonight, however, I do not believe that it worked in its intended capacity. Tonight we had a member who was upset seemingly about a lot of things and, in my opinion, inappropriately took it out on other members of the group. believe that this group is an acceptable place to be mad and frustrated, believe me there is much in this world for an Aspie to be frustrated about. Our group is not a place insult or disparage other members. In my opinion, I know that I, and the majority of members of our group hold themselves that standard and I believe that I was doing so this evening.
However, I know that some may believe that I did not act in that manner. To the member who was very upset, I am terribly sorry if you feel I acted in that way. Believe me, I was never laughing at you or making fun of you. I genuinely wanted to help provide some guidance with your struggles (which I and the rest of our group have shared). I was deeply hurt when the word "evil" was used to describe me. I was never laughing at anybody's pain, I would never do that. Instead I was trying to project myself in a way that would reduce the tension, I am sorry that failed.
We have all been where you are before but as the famous internet video says "it does get better." Unfortunately, I believe that today was difficult for our group to have a productive session. There are no magic bullets to dealing with all of our issues, sometimes, what it really takes is time, patience, and a willingness to look at things in a new perspective (I know this last one is very difficult for me too).
I hope that you are okay, that you made it home safely, and that you are not planning or taken any rash actions. If you come back I know that you will find an open and accepting forum. In fact, if you do come back I will purchase you the beverage of your choice, be it tea, a soft drink, or (if you are of legal age) a beer. If you don't want that, at least let me shake your hand.
https://groups.yahoo.com/neo/groups/dcaspie/conversations/messages/18851
Mar 17, 2013
After Saturday's meeting I accompanied the distressed member part way home on Metro. We had a good conversation and exchanged contact information. We parted ways feeling positive and with plans to meet up again.
The practice of saying "Thanks for sharing" and NO CROSSTALK after comments is a good one. I have also attended ACA [Adult Children of Alcoholics] support groups.
Thank you all for sharing!
https://groups.yahoo.com/neo/groups/dcaspie/conversations/messages/18852
Mar 17, 2013
Glad to hear that he's fine. Having had the night [t]o reflect, I believe that the best way to avoid issues like this is or all of us to assume that feedback is meant with good intentions, not bad. Yes, I can seem harsh and blunt, but I think one of us (I know I get this way) have a hard time even with constructive comments. So, perhaps the group should have an "assume good faith policy."
Leaders of autistic-run self advocacy organizations also fail to see individual member problems as individual manifestations of systemic problems.
On Mar 20, 2013 at 4:17PM
linda[redacted by post author]@[redacted by post author] wrote:
I noticed that no one who commented on how the meeting[s] are supposed to go came from anyone on the Board. If nothing else, watching how this unfolds is rather enlightening.
Linda
——Original Message——
Sent: Wed, Mar 20, 2013 3:34 PM
Subject: For AAGW Board/Officers only
Hi Chuck, Linda, Jon, Alex and Stan,
….
I missed the March and February meetings but have been in touch with Chuck and Alex about Saturday evening’s meeting. It’s likely that the person who had the meltdown on Saturday night is Tyrone [redacted]. Tyrone joined our e-mail group in May 2012. In June 2012 I put Tyrone on moderation --i.e., started screening his e-mails — after Tyrone started using the e-mail group to solicit dates. At the time I warned Tyrone that he should not to use our e-mail group as a dating service.
On Monday Tyrone sent the following post; I haven’t published it on our discussion list:
http://health.groups.yahoo.com/group/dcaspie/message/17886
From: Tyrone [redacted]
<[redacted email address]>
Date: Mon Mar 18, 2013 1;25 PM
Subject: Re: [AS] Re: Tonight’s Drama
A concern I have is people PREJUDGING others. In the DC area people typically ask questions such as what do you do for work. I get asked where do you work. Is it too much for ask for people not to make assumptions, such as inquiring, bugging me about where I work? Also please do not Assume, I go to the meetings looking for a date. These are my concerns and I would appreciate it, if you guys would show respect. There were two people on the last Sat. meeting that really prejudge me. I expect for this behavior stop, before I call names out. Thank you.
Tyrone [redacted]
....
I am very concerned that Tyrone will disrupt our April and other future meetings. Chuck mentioned that Earl “Baltimore Buck” -- who is helpful and compassionate -- took Tyrone to the Metro. Should we ask Earl for advice on how to proceed with Tyrone?
Or should we immediately make clear to Tyrone (in as kind a way as possible) that there is nothing more our group can do for Tyrone and that Tyrone should seek help elsewhere.
How can we assure order at our meetings? (This is not easy.) From posts made on the list since Monday, it seems that some people raised their voices at both the February and March meetings. I am concerned that if we have people raising their voices at meetings, Teaism management might ask us to leave.
Should the next few AAGW meetings be highly structured, perhaps with handouts? This would provide less space for some members’ aimless bitching and moaning.
Finally, I am mildly irritated with Carlos and “Terry” -- two people who have vowed never to attend another AAGW meeting — clogging the discussion list with posts telling us how to improve our meetings. Carlos -- who loudly proclaims that he has foregone his well-known habit of offering unsolicited advice -- has been e-mailing countless posts offering unsolicited advice…
The president and founder of aagw.net (Mark Bernkopf) had the lack of empathy to call inequality and inequity in progress to social, and economic, inclusion “aimless bitching and moaning.” What AAGW president and founder Mark perceives as “aimless bitching and moaning” is actually autistics who are left behind in progress toward social and economic inclusion. They need help and don’t know where to go or whom to ask for help. A weakness of aagw.net, and of the self-advocacy movement, has been exposed. Systemic improvement is necessary to solve more individual problems than self-advocacy organization leaders, like Mark Bernkopf or Ari Ne’eman, acknowledge or advocate for.
To repeat, viewing individual persons' problems as manifestations of systemic problems can more quickly assemble a group of people who can organize to do the most good for the most people at the most equitable (as people need help achieving full inclusion) pace.
In neurological and communication disabilities such as autism (spectrum disorders) cure is a more ambiguous (and to some vocal autistics an undesirable) concept. Solving (often on a daily basis) regular problems performing activities of daily living such as eating, drinking, bathing, dressing, finding paid employment or income support if one is unemployed or underemployed (major life activities identified by the ADA) with the help of 'someone else's money' (taxes for means-tested 'entitlement programs' not to include earned benefits like Social Security or Medicare) such as personal care assistance, PT or OT (occupational therapy) training to help a person with a disability 'help themselves' is how 'curing' autism should be defined in public discourse. Republican candidates for legislative and executive branches of government have collectively assembled a record worse than their Democratic opponents on helping people pay the costs of inclusion in money and time that individuals cannot pay.
Including a wide range (from neurological disorder Parkinson's Disease to autism) of possible medical treatments from stem cell research is necessary to get votes to fund particular applications of stem cell technology for cures, or issue improvement if cure is an individually trauma-triggering term <trigger warning> from stem cell research. Journalism like this ('inspiration porn' and individual disclosure of disability) or this have flaws of generalizing possibility of replicated success by other people with disabilities, without organizing from the paradigm of fiscal intersectionality, that more money from a 'social safety net/welfare state' may be needed from 2 or 3 levels (state, local and federal) of government to administer competently to each recipient's satisfaction. Temporarily able-bodied is an old term the physical disability community used to remind people that anyone can acquire a disability as well as being 'born this way' as the intellectual/developmental disability community members are. The neurological diversity (neurodiversity) of human beings for non-disabled/neurotypical/temporarily able-bodied people to accept socially more than support solving independent living problems fiscally is an economically neoliberal message. Such a neoliberal (or anti-government and excessively pro-individual) message of social not economic supports ignores individual variation in class privilege or race privilege that confers on an individual the ability to compensate for (pay the costs of in money and time) poverty or oppression by race or other protected classes in the Civil Rights Act of 1964 and ADA of 1990.
The struggle continues with moral objections to CRISPR research that also fail to build the fiscal intersectionality to help (with money provided as a 'role of government in peoples' lives') pay the costs to include the person with a disability acquired by birth, illness or accident in major life activities or reduce the impairments enough to allow the person to pay the costs of inclusion themselves. Ultimately as Senator Bernie Sanders (I-VT) said in November 2015 'there is no individual freedom without individual economic security.'
More disability rights activists, including Ari Ne'eman and his twitter account conversation partner Michelle Appel,
should IMHO include fiscal intersectionality in their activism to support people with disabilities that includes the now stigmatized and triggering terms 'high functioning' and 'low functioning' (replaced by 'intense needs.)' The consequences of living in poverty are so great that people seek more certainty to avoid it rather than having faith that 'all will work out for the best' by avoiding gene editing technology as 'playing G-d.' 'Higher functioning' should be replaced with the term 'situated functioning'
to (end inclusive rhetoric for exclusive benefit in the disability rights community) start to make the disability rights activism as inclusive in benefits demanded as the rhetoric used to demand the benefits.
