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A reminder for neurodiversity

2 Sep

Its been awhile since I blogged about neurodiversity and why it matters to me as a concept. Two recent events in my own life has made me more aware of that than usual.

In the first event, which concerns me directly, I have had to have a change in the medication I take that helps me regulate the manic depression (bipolar) I am diagnosed with. Nobody knows why I need to adjust my medication, only that it needs adjusting and so I shall shortly have Lamotrigine added to the medication regime I have to take.

How does that remind me about neurodiversity? It reminds me that the basic tenets of neurodiversity – respect for the individual differences those with different neurological makeups have – are my best way of being able to move forward in this world. More on this later.

In the second event, which occurred to some of my new family two days ago, myself, my partner and her two daughters – of whom the eldest (she is 4) is autistic – were shopping. Lily began to have a meltdown, a not unknown event in supermarkets for her and one for which we have a carefully worked out strategy. However, this time our strategy was rudely interrupted when a young woman began to shake her head, gawp openly at Lily and make tutting noises. She obviously felt Lily was a naughty child, rather than an autie child.

My partner and I decided that we had had enough of people judging Lily and so remonstrated with this woman. We both explained that Lily was autistic and unable at the age of four to regulate herself in high impact environments but we had to eat and anyway why should we exclude Lily from coming out with us as a family?

The woman waved her hand at us both in a casual dismissal and said we weren’t ‘controlling’ her properly. I smiled through gritted teeth and asked her what she knew about autism. She refused to answer. I asked her again and she walked off with another casual wave of dismissal. My partner’s by now angry shout of ‘shes autistic and a little girl, she can’t help herself’ following her down the aisle.

Of course, this isn’t the first time either one of us have been exposed to such ignorance and I doubt it will be the last. I’m also sure that many parents and autistic people reading this will be familiar with ‘the look’ that can come from such ignorant people who believe they have a divine right to judge others. But it again reminded me of neurodiversity and why I believe in its most basic tenet.

My partner said to me later that what had upset her so much was that Lily (and you can substitute her name for your own or your child’s) would be – to a certain degree either a lot or some – be dependant on the good will of society as she grew up.

People like the woman in Sainsburys are the ‘anti-neurodiversity’. They believe we can and should judge immediately, based on no other evidence than what we see and hear right in front of us. To me, neurodiversity should sit and think, consider the possibilities and act accordingly, based on a desire to help society in the belief that society should do the same for us.

By specifying a desire to include those with differing neurological disorders/disabilities/differences, neurodiversity helps me to feel secure in the world. It also means that I can feel secure in the world my children will inherit.

New study – “90% diagnostic accuracy”

11 Aug

According to study author Christine Ecker in today’s Guardian:

We know already that people with autism have differences in brain anatomy and some regions are just bigger and smaller or just different in shape…[o]ur technique can use this information to identify someone with autism.

The study used 20 non autistic controls and 20 autistic people – all adults – and found ‘significant differences’ in the grey matter areas of the brain which control behaviour and language. This is nothing new in itself, differences in brain structure have long been known about in regards to autism. Whats new in this study is the method – and resultant accuracy – of the detection of autism.

In the experiment, Ecker showed that her imaging technique was able to detect which people in her group had autism, with 90% accuracy. “If we get a new case, we will also hopefully be 90% accurate,” she said. The research, supported by the Medical Research Council, Wellcome Trust and National Institute for Health Research, is published today in the Journal of Neuroscience.

If this is established as a viable method (Carol Povey of NAS states that further testing is still required) then it’ll be the first true objective test for autism ever developed. So far, as everyone knows, autism is diagnosed based on the opinion of a clinician (or team of specialists). Whilst they will probably still play a role, this test offers an objectivity that would be unparalleled. It would also have the interesting effect of making the DSM diagnosis largely obsolete.

National Council on Disability Newsletter, June 2010

28 Jun

I received the Newsletter for the National Council on Disability via email this morning:

Message from the Chairman:

I am truly honored to have been appointed by President Obama as Chairman of the National Council on Disability (NCD). I am delighted to be joined by seven new Members whose nominations were also confirmed by the U.S. Senate this Spring and our continuing Members appointed by President Bush. To learn more about our Members, please visit: http://www.ncd.gov/newsroom/members/members.htm.

This is the first newsletter of my chairmanship and as such I am actively seeking your input and advice to make NCD more transparent, participatory, and collaborative in implementing the public policy mandate found in NCD’s authorizing statute.

My primary objective is to build a solid foundation for NCD to carry its work into the future and that means being able to coordinate and collaborate effectively across the Federal Government, with state and local governments, and with a variety of stakeholders within the disability community. We are at a critical juncture. There is no longer any mystery about the broad policy objectives for people with disabilities. The uncertainties regard concrete and actionable steps toward implementing our policy objectives. Absent effective leadership and coordination, we will continue to fall short both in improving the lives of people with disabilities and in stabilizing our nation’s fiscal health.

To be an effective agent, NCD must actively engage with the community it was created to serve. Accordingly, NCD will be aggressive, creative, and steadfast in identifying ways to be transparent about its activities and to solicit input from all interested stakeholders. NCD’s engagement will also need to be timely and relevant. NCD will strive to help set the agenda where it can, but our greatest impact will frequently be on issues and topics for which there are windows of opportunity. We need to ensure that NCD is aware of these windows and how best to tailor and present its recommendations so that they make a real difference in advancing disability policy objectives.

I welcome and value your feedback on the Council’s activities, including what you want in future newsletters and communications with the public. The Council is embarking on a new era and we want to reach out to you in this open invitation for suggestions on everything we’re doing. You are our stakeholders and we depend on you to let us know how we can better serve the community. I encourage you to share your thoughts, ideas, and general comments. You can email NCD at ncd@ncd.gov. There is much work to be done and your feedback is key.

Sincerely,

NCD_signaature02.png

Jonathan Young

In the News

Congressional Testimony

On June 15th, Chairman Young had the privilege of testifying before the Subcommittee on Emergency Communications, Preparedness and Response on “Caring for Special Needs during Disasters: What’s being done for Vulnerable Populations.” His testimony can be found at: http://www.ncd.gov/newsroom/news/2010/HS_Subcomm_Young_Testimony_FINAL.htm. The purpose of this hearing was to receive testimony on the actions taken by FEMA, non-profits, and localities to address the needs of vulnerable populations, including people with disabilities, the poor, children, and persons with limited English proficiency, during disasters.

National Summit on Disability Policy 2010

Since Chairman Young’s confirmation he has been immersed in preparation for NCD’s National Summit on Disability Policy, which will take place at the Renaissance Washington, DC Hotel, 999 9th Street, NW, Washington, DC, July 25–28, 2010.

The Summit’s cross-cutting theme of Living, Learning & Earning is designed to launch a national dialogue on disability policies and programs in the 21st century. As the invited guests gather in Washington, DC to celebrate the 20th anniversary of the signing of the ADA, we want to begin substantive discussions about the future of disability policies and programs and promote extensive collaboration at all levels of government and among all stakeholders. The Summit now includes an additional half-day, post-Summit discussion session on July 28, where NCD will reflect on the Summit’s proceedings and entertain additional stakeholder input.

White House Launches Celebration Of 20th Anniversary Of Americans With Disabilities Act
On June 8th Valerie Jarrett, Senior Advisor to President Obama, kicked off the White House’s celebration of the 20th Anniversary of the Americans with Disabilities Act, delivering remarks to over 2,000 people from around the world at the VSA International Festival at the Kennedy Center. Read Ms. Jarrett’s full remarks at http://www.whitehouse.gov/blog/2010/06/08/white-house-launches-celebration-20th-anniversary-americans-with-disabilities-act

FCC ADA Anniversary Celebration

As part of its continuing effort to develop and implement consumer-focused policies, including disabilities access, the Federal Communications Commission (FCC) will begin its year-long celebration of the 20th Anniversary of the ADA on Monday, July 19, 2010. The event will be held in the afternoon, in the Commission Meeting Room. The event will include the following:

•Launch of the Commission’s Accessibility and Innovation Forum
•Announcement of FCC initiatives concerning disability access
•Technology Expo of emerging communications equipment and services
•Debut of a video documenting first-person testimonials on disability access
•Performances by Gallaudet University students

Additional information about the event will be released at a later date. The celebration is free and the public is encouraged to attend. Pre-registration is encouraged, but not required. To pre-register or request accommodations, please send an E-mail to: Pam.Gregory@fcc.gov, or call (202) 418-2498 voice; (202) 418-1169 TTY.

NCD Vice Chair Fernando Torres-Gil Addresses Aging

On May 27, NCD Vice Chair Fernando Torres-Gil, Ph.D., provided the keynote address at the 2010 Area 1 Agency on Aging’s “Celebration of Seniors” luncheon and awards ceremony in Eureka, California.

Read the entire advance story from the May 25 Eureka Times-Standard at http://www.times-standard.com/lifestyle/ci_15156690.

NCD Board Member Gary Blumenthal Discusses Center Closure

On May 20, NCD Board Member Gary Blumenthal’s guest column on closing a local developmental center appeared in the Waltham, Massachusetts, Daily News Tribune.

Read the entire column about the closure of Fernald Developmental Center at http://www.dailynewstribune.com/opinions/columnists/x258107902/Fernald-closure-saves-money.

On May 30, the Boston Globe published a letter to the editor by Mr. Blumenthal that discusses the benefits of community-based settings.

The letter can be found at http://www.boston.com/yourtown/sudbury/articles/2010/05/30/disabled_can_find_opportunities_in_the_community/.

Federal Medical Assistance Percentages

On June 7, NCD Chairman Jonathan Young sent a letter to Senate Majority Leader Harry Reid and Senate Minority Leader Mitch McConnell urging swift action in providing a six-month extension of the enhanced Federal Medical Assistance Percentages contained in the Senate-passed American Workers, State, and Business Relief Act of 2010 (H.R. 44213) but omitted from the American Jobs and Closing Tax Loopholes Act passed by the U.S. House of Representatives.

Anniversary of Olmstead v. L.C.

June 22 marked the 11th anniversary of the landmark 1999 U.S. Supreme Court decision in Olmstead v. L.C., in which the Court held that the unjustified institutional isolation of people with disabilities is a form of unlawful discrimination under the ADA.

Since that time, progress has been made. Many individuals have successfully transitioned to community settings, but waiting lists for community services have grown considerably and many individuals who would like to receive community services are not able to obtain them.

NCD believes that continued implementation of Olmstead is of paramount importance to the nation as demographics shift toward older Americans, and is one of the top priorities of the disability community.

CMS Announcement

Our partners at the Centers for Medicare and Medicaid Services (CMS) made a recent announcement that we believe will be of interest to you:

CMS State Medicaid Directors Letter # 10-008 issued May 20, 2010, entitled “Re: Community Living Initiative,” which reminded states of their obligations to implement the Olmstead decision, reported on recent progress made as a part of the Community Living Initiative and highlighted resources and guidance to help states in their compliance efforts.

You can download a PDF of the CMS State Medicaid Directors Letter from http://www.cms.gov/smdl/downloads/SMD10008.pdf.

The Affordable Care Act

A blog, entitled “What the Affordable Care Act Means for Americans with Disabilities” by Henry Claypool, Director of Office on Disability, U.S. Department of Health and Human Services, was posted on May 21, 2010, at http://www.healthreform.gov.

To read the entire blog, please go to http://www.healthreform.gov/forums/blog/disabilities.html.

ODEP Announces National Disability Employment Awareness Month Theme

On May 13, the U.S. Department of Labor’s Office of Disability Employment Policy unveiled the official theme for October’s National Disability Employment Awareness Month: “Talent Has No Boundaries: Workforce Diversity INCLUDES Workers With Disabilities.” The theme serves to inform the public that workers with disabilities represent a diverse and vibrant talent pool for hire.

To read the full announcement, please go to http://www.dol.gov/opa/media/press/odep/ODEP20100630.htm.

FCC and FEMA Announce Workshop on 21st Century Emergency Alerting: Leveraging Multiple Technologies to Bring Alerts and Warnings to the Public

On June 10, the Federal Communications Commission’s Public Safety and Homeland Security Bureau and the Federal Emergency Management Agency’s (FEMA’s) National Continuity Programs held a workshop on 21st Century Emergency Alerting: Leveraging Multiple Technologies to Bring Alerts and Warnings to the Public.

This meeting was important to people with disabilities because emergency warnings still do not adequately reach people with disabilities during disasters. Most disaster warnings broadcast via conventional media avenues only, which may not be accessible to people with hearing or vision disabilities.

For more information, please see the full announcement at http://hraunfoss.fcc.gov/edocs_public/attachmatch/DOC-298198A1.txt.

About the National Council on Disability Newsletter

The Newsletter, which is also available on the Council’s website at www.ncd.gov, brings you the latest issues and news for people with disabilities. To subscribe to the NCD listserv, go to http://listserv.access.gpo.gov, click on online mailing list archives, select NCD-NEWS-L, then join or leave the list, and finally, complete the short subscription form.

Ari Ne’eman’s previous work with the National Council on Disability

23 Jun

Ari Ne’eman has been appointed as a full member of the National Council on Disability. With that announcement came some criticism of the appointment, including comments on this blog indicating that Mr. Ne’eman’s doesn’t have the experience necessary to serve.

Given that, I thought I would share a couple of things I found on the NCD’s website. I was searching for an announcement of the Senate confirmation of his appointment. What I found was a surprise to me: Mr. Ne’eman has been working with the NCD since 2007 in the Youth Advisory Council.

This recent announcement acknowledges some of Mr. Ne’eman’s work bringing together a coalition of disability organizations:

Advisory Committee Member Achievement

NCD’s Youth Advisory Committee policy workgroup leader, Ari Ne’eman (NJ), received recent accolades for his successful leadership of advocacy work that mobilized the broader disability community on an international scale. In his thank-you note to the 22 disability rights organizations and countless individuals whose combined efforts resulted in withdrawal of an ad campaign depicting people with disabilities in a negative way, Ari noted “this is a victory for inclusion, for respect and for the strength and unity of people with disabilities across the world” (www.autisticadvocacy.org).

Mr. Ne’eman was a leader of the NCD’s Youth Advisory Council policy workgroup starting in 2007.

With its charter renewed until October 2009, NCD’s YAC met on November 15, 2007, after welcoming seven new members, new officers (Amy Doherty-chair; Carly Fahey -vice chair; Matt Cavedon -Secretary), procedural workgroup leaders (Ari Ne’eman-Policy; Daman Wandke-Outreach and Networking), and mentors (Stephanie Orlando and Miranda Pelikan). The committee reported topics and issues of interest such as aversives and restraints, healthcare accessibility, expanding ways of gathering youth and young adult perspectives, and planning to make a new proposal to NCD about disability history awareness-raising. We welcome aboard in FY2008 Jesutine Breidenbach (MN), Brett Cunningham (OK), Paul Fogle (PA), Eddie Rea (CA), Nicole Schneider (FL), Nathan Turner (OH), and Bryan Ward (DE). YAC meets again on January 17, 2008, at 4:00 p.m. EST. Please e-mail your questions about YAC to Dr. Gerrie Hawkins

Maybe it is time to give Mr. Ne’eman credit for years of service and welcome him to the NCD?

Penn Jillette doesn’t know his ADA from a hole in the ground

23 Jun

Apologies for the title. But watching a Penn and Teller Bull**** episode a few times over has inundated me with profanity.

Penn and Teller are a magician team. They also have a show on American cable TV, Bull*****. They have an upcoming episode on the anti-vaccine movement and because of this Penn has recently put out a short video about Andrew Wakefield. When I blogged that piece, one commenter noted that Penn and Teller have taken on the Americans with Disabilities Act (ADA), claiming it is “bull**** on wheels”. OK, the commenter didn’t quote the “Bull**** on wheels part, but that’s how Penn describes it.

I found that there was an episode of Bull***** called “Handicap Parking”, in which Penn and Teller take on the ADA. The episode is below. Warning, Penn is fluent in profanity.

This is the first episode of “Bull****” I have watched. I will say parts of it are interesting. Watch what is going on in the background. There is a guy who is very adept at getting around in his wheelchair. Certainly more of an athlete than either Penn or Teller (or I, for that matter). Even while is he there to make the point that one can be in a wheelchair and still be quite capable, he also would not be able to get out of his car if someone were to park right next to him–and that is at the very beginning of the episode. No one is free from being poked at. Take the gentleman who most closely tells the story that Penn is promoting. At one point they have a voiceover from that gentleman talking about how with the ADA in place, people are not compassionate and accommodating. In contrast to that message, the video shows strangers pausing to open doors and be polite to him.

But those events are minor compared to some of what is said and done on that show:

Where to begin? I realize that they only had 30 minutes, but the ADA is not just about physical disabilities and certainly not just about parking. Penn’s approach is not so much ableist as libertarian: the government shouldn’t be mandating “compassion”. There’s ableism in there, don’t get me wrong. When discussing accessible buses he comments, “if you were disabled and lived in New York City what more could you ask for…other than not to be handicapped?”

Now here’s the bit of chicanery that got me to blog this. This comes about 4 minutes into the part 2 video.

“Who does the ADA classify as disabled? It starts with people who use a wheelchair, cane, crutches or a walker…” He goes down a list until he gets to “Now it gets a little vague. And here’s where it gets f***ed up. You see, in order to get to that 50 million number, according to the government, also includes people who have difficulty keeping track of money, doing light housework, and using the phone. No s***.”

They then cut to Teller in his car looking quizzically at his cell phone. When he can’t figure it out, he puts up a handicap placard and gets out. Yes, if you can’t use a phone you get to park in a blue space.

They are using the absurd to make a point with Teller and the phone. Sure. But what about Penn’s voice over leading up to that? Is he quoting the ADA? No.

The definition of a disability according to the ADA is:

(1) Disability

The term “disability” means, with respect to an individual

(A) a physical or mental impairment that substantially limits one or more major life activities of such individual;

(B) a record of such an impairment; or

(C) being regarded as having such an impairment (as described in paragraph (3)).

(2) Major Life Activities

(A) In general

For purposes of paragraph (1), major life activities include, but are not limited to, caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working.

(B) Major bodily functions

For purposes of paragraph (1), a major life activity also includes the operation of a major bodily function, including but not limited to, functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions.

(3) Regarded as having such an impairment

For purposes of paragraph (1)(C):

(A) An individual meets the requirement of “being regarded as having such an impairment” if the individual establishes that he or she has been subjected to an action prohibited under this chapter because of an actual or perceived physical or mental impairment whether or not the impairment limits or is perceived to limit a major life activity.

(B) Paragraph (1)(C) shall not apply to impairments that are transitory and minor. A transitory impairment is an impairment with an actual or expected duration of 6 months or less.

No language “if you can’t use a phone, you get a handicap parking space.”

Where did that come from? They have a visual in place to support Penn’s voice over. That document is here. Did you notice the link? That’s a document from the Census Bureau, not a quote of the ADA at all. It’s a bit of sleight of hand, if I may call it that. He tells us the figures and definition are from the ADA website, but is actually using a document and statistics from another agency (the Census Bureau) created for a different purpose.

Maybe ada.gov has the 50 million disabled statistic Penn refers to. If so, I can’t find it. It doesn’t change things. Penn uses one definition of disability–a broad definition–to make the claim that the ADA is too broad.

This allows Penn to say, “The ADA equates the difficulties of a 21 year old blind girl with severe autism to some a-hole who can’t figure out how to use redial”.

No. The ADA does not equate the two. But that would get in the way of Penn’s narrative–that there are a lot of people without “real” difficulties who are misusing the ADA. One of his guests asserts that “Without this law, the *truly* handicapped would be socially, morally and financially better off than they are today”. Rather than back that statement up with some data Penn goes to comedy, pushing a guy in an iron lung around Hollywood.

As the episode goes on, they bring up a man who does appear to be misusing the ADA to demand money from businesses he claims are not accessible. Yep, there are bad people of all sorts. I won’t disagree there.

Nothing, including the ADA, should be above criticism. I have no problem with Penn and Teller taking a critical look. The ADA is far from perfect. But it’s important enough to get their facts straight. Also, I would disagree with the claim that society would be as accommodating if the ADA weren’t in existence.

His take, as I mentioned above, is rather libertarian. He quotes part of the purpose of the ADA, “to provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities”. He then follows with, “How about the government sticks to courts, police, defense and corruption and leaves compassion to the people who f***ing have it!”

Nice straw man there. The ADA isn’t about compassion. The word “compassion” isn’t in the text anywhere. One can be bereft of compassion and not discriminate and one can discriminate while being full of compassion. It isn’t about making people physically equal as Penn asserts.

I’ll leave you with one last segment. One of the guests comments that accessibility is similar to racial discrimination. Penn counters, “Equating handicap access with racial discrimination is bullshit. Black people weren’t allowed in the front of the bus due to Jim Crow laws of segregation. Handicap people can’t get on the bus because of Isaac Newton’s laws of physics”.

What a strange comment. Here’s a hint for Penn: lift mechanisms on buses use Isaac Newton’s laws of physics.

The Court–part of what the government is supposed to do in his libertarian view–can require buses use Newton’s laws to allow access. Frankly, buses aren’t included in Penn’s litany of what the government should do anyway, but don’t let that get in the way of a good narrative.

Finding common ground at the IACC

1 May

The Interagency Autism Coordinating Committee (IACC) met Friday. New members were introduced, including Ari Ne’eman of the Autistic Self Advocacy Network.

The autism communities are far from unanimous in goals and methods. Given the makeup of the IACC, consisting as it does of governmental agencies plus public members of organizations that have been highly critical of each other, one might wonder if it anything could get accomplished.

But, in the end, most groups have more than a single goal. And, if you remember back to your set theory lessons, that leads to intersections–overlap–common ground.

I was reminded of this watching the IACC meeting. I could only watch bits and pieces during the day. One standout part of the morning came when Jim Moody of the National Autism Association gave a public comment talking about issues of safety, elopement, drownings–preventable deaths of autistics young and old.

Towards the end of the meeting I listened to a number of people refer back to this presentation. Amongst these commenters was Ari Ne’eman. Mr. Ne’eman obviously took the idea seriously and was calling for serious consideration of how this could be implemented into the Strategic Plan, calling for input from the services subcommittee.

I know the idea of safety are not new to Mr. Ne’eman. I contacted him recently when I was preparing a piece, Search and Rescue and autistics.

The members of the IACC span a wide diversity of ideas and viewpoints. Diversity, that’s a good thing.

But, working together for the common good: that’s common ground. Ideas that span diverse organizations and viewpoints. That is a very good thing.

Ari Ne’eman’s appointment to the National Council on Disability on hold

28 Mar

In a piece in the New York Times, Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism, Amy Harmon discusses Ari Ne’eman and his nomination to the National Council on Disability (NCD).

Mr. Ne’eman’s name was submitted by the White House as part of a group of nominees to the NCD. His nomination is to succeed Robert Davila, whose term has expired. Mr. Ne’eman’s nomination was “ordered to be reported favorably” by the Senate HELP committee on March 10th and sent to the full senate. At present, the nomination is on hold.

Mr. Ne’eman is an autistic adult. If his nomination is confirmed he will be the first autistic to serve on the NCD. He is probably best known his efforts with the Autistic Self Advocacy Network (ASAN), which he founded. ASAN seeks to advance rights of autistcs as reflected in its mission statement:

The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports and others, ASAN seeks to organize the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens. Working in fields such as public policy, media representation, research and systems change, ASAN hopes to empower Autistic people across the world to take control of their own lives and the future of our common community. Nothing About Us, Without Us!

I will repeat for emphasis: “ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens”.

I find that a position difficult to argue with. Who wouldn’t support access, rights and opportunities for autistics?

This mission statement is fully in line with the purpose of the National Council on Disability, which also promotes rights and opportunity:

The purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.

As the parent of an autistic child with very significant disabilities, I can say without reservation we need groups working on improving the rights and access and opportunities of autistics. I believe Mr. Ne’eman and the National Council on Disability would be an excellent match.

In her piece in the Times, Ms. Harmon notes that it is unclear who put the hold on the nomination and what the reason may be. Senate rules allow for a single senator to place a hold, anonymously, for any reason (including just plain obstructionism):

Mr. Obama’s seven other nominees to the council were confirmed this month. But parliamentary procedure in the Senate allows one or more members to prevent a motion from reaching the floor for a vote by placing an anonymous hold on the action, which an official with knowledge of the proceedings said had been done in Mr. Ne’eman’s case.

The Senate has been rather obstructionist in approving many Obama administration appointments, leading the President to employ recess appointments in order to get some of his nominees into jobs. Recess appointments are not the sort of action the President takes lightly, indicating the level of obstructionism in place.

Mr. Ne’eman’s nomination to the NCD generated some discussion within the online autism communities when it was announced. For many people this centered on a question of whether Mr. Ne’eman viewed autism as a disability. Many went so far as to outright claim that he does not see autism as a disability. It would seem clear that Mr. Ne’eman views autism as a disability merely from ASAN’s mission statement which places ASAN as a disability rights organization. For those who remained unsure, Mr. Ne’eman answered this claim quite clearly in a recent piece he wrote for Disabilty Studies Quarterly:

It should be stressed: none of this is meant to deny the very real fact that autism is a disability. It is only to point out that disability is as much a social as a medical phenomenon and that the “cure” approach is not the best way forward for securing people’s quality of life.

Mr. Ne’eman and ASAN have been very active in united efforts by multiple disability groups, such as the recent request for an investigation into the methods employed by the Judge Rotenberg Center (which includes electric shocks and seclusion). One thing lacking in most autism organizations, in my view, is the recognition of our place within a larger disability community. Mr. Ne’eman’s track record of collaborations within this broader community is another sign that he would be an excellent candidate for the NCD.

The Times article concludes with:

But the split among autism advocates, suggests Lee Grossman, director of the Autism Society of America, may simply reflect the unmet needs of a growing population, for both research into potential treatments and for programs to support jobs and independent living.

“We have this community out there frustrated and bewildered and reaching out for any assistance, and that makes us battle-hardened,” Mr. Grossman said. “We need to reframe the discussion. From our perspective, it’s great to have a person on the spectrum being nominated to this committee.”

I agree with Mr. Grossman that this is a great thing to have an autistic nominated to the NCD. As I’ve already pointed out, Mr. Ne’eman’s goals fit those of the NCD quite well.

One notable piece of irony in this story is that the organizations which are critical of Mr. Ne’eman’s nomination have no positions held by autistics. The notable exception is Autism Speaks, which only recently added an adult autistic (John Elder Robinson) to an advisory position. As an additional irony, it is very likely that Mr. Ne’eman’s own advocacy efforts were partly responsible for Autism Speaks giving a position to an adult autistic.

Autism represents a “spectrum” of disabilities. All to often, Mr. Ne’eman’s efforts are framed as being part of some divide between the “high functioning” and “low functioning” ends of the spectrum.

The New York Times piece noted this in this section:

But that viewpoint [neurodiversity], critics say, represents only those on the autism spectrum who at least have basic communication skills and are able to care of themselves.

“Why people have gotten upset is, he doesn’t seem to represent, understand or have great sympathy for all the people who are truly, deeply affected in a way that he isn’t,” said Jonathan Shestack, a co-founder of the advocacy group Autism Speaks, whose mission is to help finance research to find a cure.

Neurodiversity certainly does not represent only “high functioning” autistics as its critics would imply. I will not speak for Mr. Ne’eman nor ASAN, but from my own perspective. First, neurodiversity is not limited to autism. Second, within autism, neurodiversity does not apply only to the “high functioning” autistics. In my opinion, the neurodiveristy “viewpoint” is one that stresses rights for all, regardless of the level of “functioning” or presence or lack of any neurological “disorders”.

There are those who try to downplay Mr. Ne’eman’s disability. Keep in mind, we are talking about a man who spent part of his education in a segregated special education program. The fact that he was able to self advocate his way out of this program is to his credit.

For the record, my perspective is that of the parent of a young child with multiple disabilities including very significant challenges due to autism. I would argue that it is precisely children like my own who most need other people to fight to protect their rights. It is from that perspective that I welcome the nomination of Mr. Ne’eman and look forward to his confirmation in the full senate.

Disability Coalition applauds passage of Preventing Harmful Restraint and Seclusion Legislation

5 Mar

There is a bill in congress to ban seclusion and restraints in schools. It has been passed by the House (as bill 4247)and will go on to the Senate and, hopefully, the President. Below is a press release from the Autistic Self Advocacy Network (ASAN).

    Disability Coalition applauds passage of Preventing Harmful Restraint and Seclusion Legislation

Legislation that protects students with disabilities a key item on Coalition Agenda

(Washington D.C.) — The Justice for All Action Network (JFAAN), a coalition of disability-led organizations, applauds the U.S. House of Representatives for passage of HR 4247, the Preventing Harmful Restraint and Seclusion in Schools Act. The legislation, which equips students with disabilities with federal protection from abuse in the schools, was approved in the House March 3 by a vote of 262-153.

The legislation approved today is the first of its kind. It goes far beyond previous efforts to protect students with disabilities, said Paula Durbin-Westby of the Autistic Self Advocacy Network, a member of the JFAAN Steering Committee.

The Preventing Harmful Restraint and Seclusion in Schools Act will put significant restrictions on schools restraining children, confining them in seclusion rooms, and using aversive interventions to harm them. A Government Accountability Office study found hundreds of cases over the last two decades of alleged abuse and death from restraint and seclusion in public and private schools. The majority of students in the study were students with disabilities.

When passed by the Senate and signed by President Obama, this legislation will be the first step in putting an end to the long history of students with disabilities being subjected to inappropriate and abusive restraint and seclusion, said Durbin-Westby. We urge the Senate to vote on the legislation soon in order to equip students with critically needed protections from abusive restraint and seclusion.”

Currently, 23 states have laws with weak or no protections. HR 4247 will create a minimum level of protection for schoolchildren that all states must meet or exceed. Unlike previous attempts to protect students with disabilities, this legislation applies to all students and bans the worst practices, including mechanical restraint, chemical restraint and physical restraint.

Legislation that protects people with disabilities from unwarranted restraints and seclusions is a key component of a campaign agenda developed by JFAAN. The JFAAN Joint Campaign Agenda addresses major policy issues of people with intellectual, physical, psychiatric, developmental and sensory disabilities.

Created in an effort to build a strong and unified cross-disability movement, the Justice for All Action Network is organized into a steering committee of 13 national consumer-led disability organizations and more than 20 organizational and individual members. The group was formed in the wake of the 2008 Presidential Election.

About the Justice for All Action Network

Mission: The Justice for All Action Network is a national cross-disability coalition, led by disability groups run by persons with disabilities with support from allies, committed to building a strong and unified cross-disability movement so that individuals with disabilities have the power to shape national policies, politics, media, and culture.

Working as a coalition, JFAAN is committed to accomplishing each item on the coalition’s agenda by July 2010, the 20th anniversary of the Americans with Disabilities Act.

Steering Committee Members: ADAPT, American Association of People with Disabilities, American Council of the Blind, Autistic Self Advocacy Network, Hearing Loss Association of America, Little People of America, National Association of the Deaf, National Coalition of Mental Health Consumer Survivor Organizations, National Council on Independent Living, National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, United Spinal Association.

For more information, contact Paula Durbin-Westby, Autistic Self Advocacy Network, (540)-223-6145, pdurbinwestby@autisticadvocacy.org; Andrew Imparato, American Association of People with Disabilities, (202) 521-4301, aimparato@aapd.com.

My congressperson voted yes.

I note that Dan Burton, congressman from Illinois and vaccine critic, voted against the bill. Mr. Burton has been called “one of the foremost champions of autistic causes in Congress.” I find this nay vote very troubling. On the other hand, Congresswoman Maloney, also a vaccine critic, voted yea. The vote was very much a democrat vs. republican divide, which may explain the two congresspeople above.

Facilitated Communication – where does a neurodiverse skeptic stand?

6 Oct

An article in yesterdays Longmont Times raised (for me anyway) the issue of Facilitated Communication.

This is an issue that is, in its own way, just as divisive as the vaccine issue amongst sections of the autism community and science. You see, some autistic and autism advocates believe passionately in the efficacy of FC whilst science largely rejects FC:

Current position statements of certain professional and/or advocacy organizations do not support the use of Facilitated Communication due to their objections that it lacks scientific validity or reliability. These organizations include the American Speech-Language-Hearing Association, Association for Behavior Analysis International (ABAI), American Academy of Child and Adolescent Psychiatry, and the American Association on Mental Retardation. ABAI calls FC a “discredited technique” and warns that “its use is unwarranted and unethical.”

The Association for Science in Autism Treatment reviewed the research and position statements and concluded that the messages typed on the communication device were controlled by the facilitator, not the individual with autism, and FC did not improve their language skills. Therefore, FC was reported to be an “inappropriate intervention” for individuals with autism spectrum disorders

The section of the autism community that accepts FC as a valid technique is largely the neurodiversity movement in who’s ranks I place myself. But is this making me a hypocrite? I place such firm emphasis on science when it comes to vaccines I can do no less in other areas. But on the other hand voices I trust implicitly within the neurodiversity movement speak out in favour of FC. Amanda Baggs, Kathleen Seidel and (I think) Michelle Dawson to name but three. * [correction: Michelle is not an FC supporter] *

So what do I do? Should I be making a call for more studies (sounds familiar!) or dismissing the voices of autistic people I trust on the issue or dismissing established science?

Or is there another option? What are your thoughts on FC? A decent debate would be useful for lots of people I think.

Autism community need to learn lesson

22 May

As is accepted by most rational people, autism is a largely genetic difference, albeit with a likely environmental component. Over the last 10 years or so a seemingly increasingly irrational desire to blame vaccines for causing autism has been coupled with a similarly irrational ‘cure at all cost’ mentality. The subsequent parent driven engine has resulted in autistic kids being exposed to shysters, snake oil salesman and out and out quacks selling their own version on dangerous exploitation.

However, in a revealing picture of what the ‘cure at all cost’ mentality might be doing not only to autistic people but to the human race in general we could do no worse than to look at recent discoveries in another genetic based difference – Down Syndrome:

A gene that’s present in the extra chromosome people with Down syndrome protects this population from getting many types of cancers, according to a study published in the journal Nature Wednesday.

…..

The answer lies in a gene called Dscr1, which is one of the genes present in Down syndrome causing chromosome 21. Since people with Down syndrome have an extra copy of this chromosome, they also have an extra copy of Dscr1. Researchers studied the gene in mice with human cells and found that it limits the growth of blood vessels that tumors feed on.

All the years that people with Down Syndrome have taken abuse, been put down and – most ironically of all – had pre-natal testing performed that has resulted in a drop of Down’s babies. And now it seems they might hold the key to destroying at least some forms of cancer. Imagine if we only found that out after the last Down’s adult had died?

Imagine what we might find out if we start looking at research that works _with_ autistic people. Imagine what we might lose if we decide to plow ahead with a ‘cure at all cost’ mentality.

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