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Dan Aykroyd, still autistic after all these years

5 Dec

With all the recent hullabaloo about how celebrities being autistic somehow harms the autism community (if you don’t know what I’m talking about, check news sources for Jerry Seinfeld and autism), one counter example seems to be ignored: Dan Aykroyd.  Mr. Aykroyd is perhaps most famous for his movie Ghost Busters, but his credits are many (including my favorite, Elwood Blues of the Blues Brothers).  He’s a successful entertainer, and a diagnosed autistic.

Begs the question, why no backlash against him?

One can only speculate, so speculate I will.  First, Mr. Aykroyd’s “coming out” didn’t make such a public splash.  In my mind, that’s the most likely explanation for a lack of backlash.  People could see his statement as more of a threat.  Also, with more publicity, people know that their responses will be more widely read.  A second reason for the difference in response is that Mr. Aykroyd handled the topic much better than did Mr. Seinfeld.   Consider these two news stories:

In 2013 he was interviewed by the Daily Mail.  In ‘I have Asperger’s – one of my symptoms included being obsessed with ghosts’, Mr. Aykroyd responded to the question of what is his “worst illness” thus:

I was diagnosed with Tourette’s at 12. I had physical tics, nervousness and made grunting noises and it affected how outgoing I was. I had therapy which really worked and by 14 my symptoms eased. I also have Asperger’s but I can manage it. It wasn’t diagnosed until the early Eighties when my wife persuaded me to see a doctor. One of my symptoms included my obsession with ghosts and law enforcement — I carry around a police badge with me, for example. I became obsessed by Hans Holzer, the greatest ghost hunter ever. That’s when the idea of my film Ghostbusters was born.

Dan Aykroyd: ‘My Harley-Davidson is a form of psychiatric therapy. You get on that and you don’t need a shrink’

My very mild Asperger’s has helped me creatively. I sometimes hear a voice and think: “That could be a character I could do.” Of course there are many different grades, right up to the autism spectrum, and I am nowhere near that. But I sympathise with children who have it.

Let’s do the compare and contrast with Mr. Aykroyd and Mr. Seinfeld.

1) Mr. Aykroyd has a diagnosis.  About 3 decades ago he was diagnosed.  Of course, back then Asperger syndrome wasn’t an “official diagnosis”.  But, of course Asperger’s work on autism goes back as far as Hans Kanner’s work.  Mr. Seinfeld doesn’t have (nor did he claim to have) a diagnosis.

2) Mr. Aykroyd was also diagnosed with Tourette syndrome.  At age 12.  So, having a neurlogical diagnosis early on gives more credence to his later-in-life autism (Asperger) diagnosis.

3) Mr. Aykroyd has acknowledged that his challenges are much less than most autistics. This is a big point.  Temple Grandin does the same thing, by the way.  As do pretty much every self-advocate I’ve ever encountered in real life or online.

So, yeah, Mr. Aykroyd and Mr. Seinfeld approached their public discussions of autism very differently.  And, as a result have received very different responses.

Leaving aside the lack of any “rage spirals” involved in Mr. Aykroyd’s revelation, what about the basic fact that he’s been essentially ignored?  Here we have an autistic, with comorbid Tourette syndrome, who is successful.  Who credits his autism as contributing to his success.

Why is he ignored?  Perhaps that question is asked and answered.  He’s successful and he credits his autism with contributing to his success.  That doesn’t fit into the narrative.  While Mr. Aykroyd is NLMK (not like my kid), he could be a hero for some in the autism community.  Why can’t we have autistic heroes?  Autistic people whom autistics and non-autistics can look up to and say, “Dang, s/he did well”?

The answer is we can have autistic heroes.  We can acknowledge successful autistics.   Because there is no one face of autism.  Autism can be Dan Aykroyd and be people who need extraordinary support so they don’t end up sedated or restrained in an emergency room.  Sometimes we talk about those who meet a more standard definition of successful. Sometime we talk about those with more extraordinary challenges.  And sometimes we talk about the entire spectrum in a single conversation.  That’s what it means to be part of such a varied community.

By Matt Carey

Disneyland and the Disability Access Service Card

2 Dec

When Disney announced that they were going to change how they handled services for disabled guests, I and many others were concerned. The old system was very informal and worked well, in my opinion.  It was just a piece of paper and you showed it to people at the line and they would help you by either putting you in a separate disability line or let you go to the exit and get in line there.  It made it possible to enjoy the park without waiting in long lines where the disabled person and, possibly, others in the line would have a much less than optimal experience.  While it didn’t guarantee short lines, in practice that’s they way it often worked.  So people who just can’t take Disneyland for long periods of time could get a “full day” in a few hours.  With Disney costing $90 for kids, $96 for those 10 and older, it’s a big deal if you can only be there for a few hours and most of that time is spent in line.  I could seriously see getting on one, maybe two major rides and that’s it.

But, sadly, informal systems can be gamed easily.  And that’s what happened.  See Rich Manhattan moms hire handicapped tour guides so kids can cut lines at Disney World for an example.  Or just read the title.

Shannon Rosa wrote about the new system over at The Thinking Person’s Guide to Autism as One Autistic Teen’s Disneyland Success Story.   She and Leo visited Disneyland a few weeks ago (Nov. 2014).  Also, there’s Disney DAS from a diary of a mom describing their trip in May to Walt Disney World.

Shannon mentioned in her article that they were about to change the disability access service again.  And by the time I went with my family, changes had taken place.

I’ll go into more detail below, but the main point in how the disability pass works is this: for rides where they have a fast-pass entrance, the ticket for the disabled person is the disability pass.  That ticket works much like a fast-pass.

So, here’s the “more detail” part:

Step 1: go to City Hall on Main Street (it’s too your left as you enter the park).  Bring your entire party and all the tickets.  I stood in line and called my family when I got to the front (that whole, not doing well with lines, thing).

Step 2: At City Hall they will take the picture(s) of the disabled person(s).  They will scan all the tickets.  You need to specify which ticket(s) belong to the disabled person(s).  They ask you to write that person’s name on the ticket. That ticket has to be used for most rides where he/she wants disability access.

You will also be given a white piece of paper with the terms and conditions for disability access.  You will be asked to sign a copy of these terms and conditions.  Keep your copy–it’s your disability pass for rides without the fastpass like access.

Step 3: They will explain the process to you while they scan your tickets so you can get more accurate and up-to-date information than I’m giving here.

Step 4: The Disney cast member who is helping you will ask which ride you want to go on first.  Tell them that and they will scan your tickets and tell you when you can go on that ride.  For example, we said, “It’s a small world”. It was 10:30am.  We were told that any time after 11am we could go to the disability line.

Step 5: Enjoy the park, other rides, shopping, music, resting, etc. until your time.  Any time after your appointed time, you can go to the disability access line for that ride.  Tickets are scanned and you are allowed in line. For It’s a Small World, there is a separate disability access line.  For other rides, say, Star Tours, one goes to the fastpass person.  That person will scan your ticket and then you are in the regular line.  The Star Tours person gave us a plastic laminated pass that we took with us to the next person in line.  I’m not sure what purpose that serves.

Step 6: Once done with a ride, you can get in another “virtual” line with your pass.  There are three kiosks in Disneyland for this.  One in the Main Street central plaza.  One is in Fantasy Land between Dumbo and the Storybook Land ride.  The third is in Tomorrow Land between Star Tours and the gift shop at the exit of Star Tours.  The person at the kiosk will scan your tickets and tell you what time you can get in the disability access line.

Alternatively, one can go to the fastpass person at the line for the ride you want to get on and ask to be put on the virtual line for that ride (and that ride only).  When I went to some rides I was asked “do you want to get in line or are you already registered”.  So, you don’t have to go to one of the three disability kiosks each time.  I got some mixed messages about that, though.  One person told me that I couldn’t be added.

Not all rides have disability access lines or fastpass.  For example, the train. At the train we asked a cast member what to do and were told to just wait at the exit.  When the train came to the station, we showed another cast member our white pass (remember those terms and conditions discussed above?) and got on the train.  Basically, this is how the old disability access pass worked.

Disney has a web page on disability access and strategies: Services for Guests with Disabilities.  There’s a pdf on the Disability Access Service (DAS) there, and I’ve copied it here: dlr-disability-access-service_2014-11-19.

I bring this up because here’s a key paragraph in that document:

DAS, with its virtual wait, will accommodate many of our Guests with disabilities. We recognize, however, that our Guests with disabilities have varying needs, and we will continue to work individually with our Guests to provide assistance.
In unique situations, our Guest Relations staff will discuss special accommodations for persons who are concerned DAS doesn’t meet their needs (e.g., those whose disability limits the duration of their visit to the park or limits their choice of attractions).

All accommodations will be made in person, on site at Guest Relations. We are unable to provide accommodations in advance of a Guest visit.

This tells me they’ve been paying attention to people like myself who have complained that it isn’t just the lines for each ride that matter.  For some of us, our time in the park is very limited.  And at $100/ticket ($90/kids under 10), it’s a big deal to go to Disneyland.  Even with accommodations, my kid was melting down in the last line and we were not at the park for very long.

Next time I’m printing out that pdf (or whatever they have at the time) and bringing it along.

By Matt Carey

Nick Walker on Neurodiversity: Some Basic Terms & Definitions

25 Oct

Nick Walker starts his introduction with “I’m an Autistic educator, author, speaker, transdisciplinary scholar, activist, parent, and martial arts master.” His writing is excellent and I’d highly recommend adding Neurocosmopolatinism to your list of blogs to track, if it isn’t there already.

A recent article by Mr. Walker covers the topic of neurodiversity clearly and accurately. It’s a great resource: Neurodiversity: Some Basic Terms & Definitions.

It is one of those articles I’d like to copy in it’s entirety. But instead I’ll send you to: Neurodiversity: Some Basic Terms & Definitions.


By Matt Carey

President Obama signs Autism CARES Act into law

12 Aug

The Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 has been signed by President Obama, making it law. This will extend and expand on the framework for authorizing appropriations for autism research and for coordinating research efforts in the U.S..

Here is the summary for the bill:

Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 or the Autism CARES Act of 2014 – (Sec. 2) Requires the Secretary of Health and Human Services (HHS) to designate an official to oversee national autism spectrum disorder (ASD) research, services, and support activities. Directs the official to implement such activities taking into account the strategic plan developed by the Interagency Autism Coordinating Committee (the Interagency Committee) and ensure that duplication of activities by federal agencies is minimized.

Extends through FY2019: (1) the developmental disabilities surveillance and research program; (2) the autism education, early detection, and intervention program; and (3) the Interagency Committee.

(Sec. 3) Includes support for regional centers of excellence in ASD and other developmental disabilities epidemiology as a purpose of grants or cooperative agreements.

(Sec. 4) Requires information and education activities to be culturally competent. Allows a lead agency coordinating activities at the state level to include respite care for caregivers. Allows the use of research centers or networks for the provision of training in respite care and for research to determine practices for interventions to improve the health of individuals with ASD.

(Sec. 5) Revises responsibilities of the Interagency Committee concerning:
• inclusion of school- and community-based interventions in the Committee summary of advances,
•monitoring of ASD research and federal services and support activities,
• recommendations to the Director of the National Institutes of Health regarding the strategic plan,
• recommendations regarding the process by which public feedback can be better integrated into ASD decisions,
•strategic plan updates and recommendations to minimize duplication, and
•reports to the President and Congress.

Revises Interagency Committee membership requirements to specify additional federal agencies that might be represented and to modify the non-federal membership.

(Sec. 6) Modifies requirements for reports by the Secretary on ASD activities. Adds a requirement for a report to Congress concerning young adults with ASD and the challenges related to the transition from existing school-based services to those available during adulthood.

(Sec. 7) Authorizes appropriations to carry out the developmental disabilities surveillance and research program, the education, early detection, and intervention program, and the Interagency Committee for FY2015-FY2019.


By Matt Carey
note: I serve as a public member to the IACC but all comments here and elsewhere are my own.

United Nations statements on Autism Awareness Day

4 Apr

The United Nations released two statments on April 2nd, Autism Awareness day. Those statements, from the U.N. Secretary General and the U.N. as a whole are below.

Secretary-General, in Message, Says Vital to Work Hand-in-Hand with Persons with Autism to Help Cultivate Their Strengths, Address Their Challenges

Following is UN Secretary-General Ban Ki-moon’s message for World Autism Awareness Day, 2 April:

World Autism Awareness Day has succeeded in calling greater international attention to autism and other developmental disorders that affect millions of people worldwide.

The current session of the United Nations General Assembly has adopted a new resolution on this issue, demonstrating a commitment to help affected individuals and families. The resolution encourages Member States and others to strengthen research and expand their delivery of health, education, employment and other essential services. The Executive Board of the World Health Assembly will also take up the subject of autism spectrum disorders at its forthcoming session in May.

This international attention is essential to address stigma, lack of awareness and inadequate support structures. Current research indicates that early interventions can help persons with autistic conditions to achieve significant gains in their abilities. Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential.

The General Assembly will hold a high-level meeting on 23 September to address the conditions of more than 1 billion persons with disabilities, including those with autism spectrum disorders. I hope leaders will seize this opportunity to make a meaningful difference that will help these individuals and our human family as a whole.

Let us continue to work hand-in-hand with persons with autism spectrum disorders, helping them to cultivate their strengths while addressing the challenges they face so they can lead the productive lives that are their birthright.

Films, Panel Discussions, Live Performances among Events to Mark Observance of World Autism Awareness Day at Headquarters, 2 April

A growing number of countries are heralding a new call for involvement in addressing autism and other developmental disorders that affect millions of individuals and their families and societies worldwide as the United Nations and communities around the globe mark World Autism Awareness Day on 2 April with commemorative events including film screenings, panel discussions and live performances.

“This international attention is essential to address stigma, lack of awareness and inadequate support structures,” said United Nations Secretary-General Ban Ki-moon in a message to mark the Day. “Current research indicates that early interventions can help persons with autistic conditions to achieve significant gains in their abilities. Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential.” (See Press Release SG/SM/14890-OBV/1195 of 20 March.)

In December 2007, the United Nations General Assembly unanimously adopted resolution A/RES/62/139, declaring 2 April World Autism Awareness Day to highlight the need to help improve the lives of children and adults who suffer from the condition, so they can lead full and meaningful lives. The rate of autism — a lifelong developmental disability that manifests itself during the first three years of life — is high in all regions of the world, and it has a tremendous impact on children, their families, communities and societies. The number of children and adults with autistic conditions continues to rise across every nation and social group.

“Let us remind ourselves that together — whether we represent Governments, civil society, the private sector or the United Nations itself — we can make a significant difference in our collective goal to create a more caring and inclusive world for people with autism,” said Peter Launsky-Tieffenthal, Under-Secretary-General for Communications and Public Information.

Children and adults with autism face major barriers associated with stigma and adverse discrimination, lack of access to support, discrimination, abuse and isolation, all of which violate their fundamental human rights, according to a General Assembly resolution (document A/RES/67/82) sponsored by Bangladesh and adopted in December 2012. Giving young children the early and correct treatment is crucial for improving their prognosis and giving them the chance to maximize their potential, according to the text.

Those issues will be explored during two panel discussions, co-organized by the United Nations Department of Public Information and the Permanent Mission of the Philippines, to be held at Headquarters on 2 April from 1:15 p.m. to 6 p.m. in Conference Room 2 of the North Lawn Building. Panellists addressing their respective themes, “Finding the ability in the disability of autism” and “Successful transition to adulthood”, will be Stephen Shore, Professor of Special Education at Adelphi University; Elaine Hall, founder of The Miracle Project, a groundbreaking theatre arts programme for autistic individuals profiled in the award-winning HBO documentary AUTISM: The Musical; Neal Katz, a teenager with autism who was featured in that film; Fazli Azeem from Pakistan, a graphic design Fulbright Scholar in Boston who is on the autism spectrum; and Idil Abdull from Somalia, who has a child with autism.

That segment of the event will feature musical performances by Talina and The Miracle Project. It will include performers with autism and remarks by Mr. Launsky-Tieffenthal, who will also open a book-signing event at the United Nations Bookstore from 11:30 a.m. to 12:30 p.m. with Stephen Shore, author of Beyond the Wall.

While public awareness remains low, global awareness of autism is growing. The new General Assembly resolution demonstrates a commitment to helping affected individuals and families, and encouraging Member States and others to strengthen research and expand delivery of health, education, employment and other essential services.

A related panel discussion titled “Addressing the socioeconomic needs of individuals, families, and societies affected by autism spectrum disorders and other developmental disorders” will be held on the new resolution’s implementation. It is co-organized by the Permanent Missions of Bangladesh, Bahrain, India, Qatar, Saudi Arabia and the United States, in collaboration with the Department of Public Information and the Department of Economic and Social Affairs. It will take place from 10 a.m. to 1 p.m. in Conference Room 2 of the North Lawn Building. On 4 April, the Permanent Mission of Israel will host a screening of the film This Is My Child at 1:15 p.m. in Conference Room E of the North Lawn Building.

Throughout its history, the United Nations has promoted the rights and well-being of persons with disabilities, including children with disabilities. In 2006, the General Assembly adopted the United Nations Convention on the Rights of Persons with Disabilities, which sought to change the view of persons with disabilities as “objects” of charity to seeing them as “subjects” — capable of claiming their rights and making life decisions on the basis of their own free and informed consent — and as active members of society, thus reaffirming the fundamental principle of universal human rights for all.

This year, the World Health Assembly will take up the subject of autism spectrum disorders at its Executive Board session in May, while the General Assembly will hold a high-level meeting on 23 September to address the condition of more than 1 billion persons with disabilities, including those with autism spectrum disorders.

Mr. Ban hopes leaders attending the meeting will “seize this opportunity to make a meaningful difference that will help these individuals and our human family as a whole”. The Secretary-General says: “Let us continue to work hand in hand with persons with autism spectrum disorders, helping them to cultivate their strengths while addressing the challenges they face so they can lead the productive lives that are their birthright.”

Contacts: Fred Doulton, tel.: +1 212 963 4466 or e-mail: doultonf@un.org; and Eileen Travers, Department of Public Information, tel.: +1 212 963 2897 or e-mail: travers@un.org.


By Matt Carey

Robert Saylor’s death ruled homicide

19 Feb

A gentleman with Down Syndrome went to the movies recently. When the movie was finished, he decided to stay to see it again. In other words, he did not get out of his seat; he did not buy a new ticket. The theater has security guards. Three of them.  Off duty police who were in police uniforms.  All three were called in to deal with this gentleman who would not get out of his seat.

The gentleman, Robert Saylor, died of asphyxiation.

Yes, for “resisting arrest” the off-duty police used enough force to result in the death of the gentleman. Because he wouldn’t buy an $11 ticket.

More at:

Autopsy finds that Md. man with Down syndrome died of asphyxia while in police custody

Robert Saylor death ruled a homicide


By Matt Carey

NCD Response to the State of the Union Address

18 Feb

The U.S. National Council on Disability (NCD) has issued a response to the State of the Union address presented by President Obama recently. I am presenting it in its entirety below:

In the annual State of the Union address, President Barack Obama addressed several policy areas of importance to the 56 million Americans with disabilities and their families. As the independent federal agency which advises the President and Congress on disability policy, the National Council on Disability (NCD) applauds the significant agenda proposed by the President and recommends the following actions to guarantee full participation and integration in all aspects of society for Americans with disabilities.

The President called for an increase in the minimum wage to $9.00 an hour by stating “in the wealthiest nation on Earth, no one who works full-time should have to live in poverty.”

NCD agrees. In 2010, statistics released by the U.S. Census Bureau revealed that nearly 28 percent of Americans with disabilities aged 18 to 64 live in poverty.

Today, hundreds of thousands of Americans with disabilities earn less than minimum wage under a little-known relic of employment policy that assumed people with disabilities were not capable of meaningful, competitive employment.

As the President said, “America is not a place where chance of birth or circumstance should decide our destiny. And that is why we need to build new ladders of opportunity into the middle class for all who are willing to climb them.”

Twenty three years after the passage of the Americans with Disabilities Act, the time has come for minimum wage to be available to everyone who works, including Americans with disabilities. Over a quarter of a million Americans with disabilities work under the Fair Labor Standards Act 14 (c) program resigning people with disabilities to earning less than minimum wages and the poverty, isolation and segregation that often results.

In our August 2012 Report on Subminimum Wage and Supported Employment, NCD recommended a gradual phase out of the 14 (c) program. The ladders our nation builds to opportunity must be accessible to every American – including those with disabilities. As America works toward increasing minimum wage, implementation of a comprehensive set of supports and targeted investments in integrated employment services to make it possible for people with disabilities to rise to the same heights as other Americans must also be assured.

In addition, the President announced a non-partisan commission to improve voting in America by emphasizing “our most fundamental right as citizens: the right to vote. When any Americans … are denied that right … we are betraying our ideals.” A Fact Sheet on the Voting Commission issued by the White House lists voters with disabilities and “physical barriers” among the issues to be corrected.

NCD appreciates inclusion of the difficulties faced by voters with disabilities as part of the Commission’s work. A Government Accountability Office (GAO) report found as recently as 2008, only 27 percent of polling places were barrier-free. In fact, the Federal Election Commission confirmed that, in violation of state and federal laws, more than 20,000 polling places across the nation are inaccessible, depriving Americans with disabilities of their fundamental right to vote. People with disabilities and senior citizens are particularly disenfranchised by long lines at polling places and by constraints on and, in some places, the discontinuation of early voting.

To address this disparity, NCD has been collecting the experiences of voters with disabilities in the November 2012 General Election from across the nation in coordination with the National Disability Rights Network and EIN SOF Communications. NCD will issue a report on our findings later this year.

NCD urges the Voting Commission to consider the findings of our upcoming report and to include voters with disabilities on their Commission.

The President also stressed the importance of key reforms to realize cost savings in the Medicare program, including the shift from a fee for service payment system to a managed care model designed to pay for performance. NCD understands the importance of shifting to payment models that both manage costs and increase quality for our health care financing infrastructure. However, it is crucial that people with disabilities and seniors retain the ability to have their needs met.

Over the last two years, NCD has conducted a detailed exploration of managed care within Medicaid, issuing comprehensive recommendations on due process safeguards, program design, performance measures and other facets of responsible managed care frameworks that consider the needs of Americans with disabilities without causing adverse consequences on the quality of care we receive. As the Administration considers various measures to enhance health care quality while controlling costs, NCD stands ready to apply this expertise to Medicare reforms.

As President Obama affirmed, “the responsibility of improving this union remains the task of us all.” NCD looks to continuing its role in developing and promoting robust disability policies in close collaboration with the Administration, Congress and the public.

– Jeff Rosen, Chairperson
On behalf of the National Council on Disability


By Matt Carey

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