Monthly Archives: March 2009

Tax Help

close up of a calculator, on keys that say 'tax+' and 'tax-'In the U.S. it’s tax time.

AAPD has blogged a series of three in tax tips for disabled taxpayers, particularly those who may have lower incomes:

1) taxes and the economic stimulus,

2) the recovery rebate credit, and

3) additional tax tips for people with disabilities, including information about the earned income credit and other tax credits specific to lower income or disabled tax payers.

The IRS is providing a free tax return preparation assistance program (Volunteer Income Tax Assistance Program) for people with low to middle income (up to around 42K) who may have difficulty preparing their own taxes.

The Hypocrisy of Airline Access

the underneath of an airplane flying over a building with a lot of exterior scaffoldingAmerican Airlines is in disability news for teaming up with AAPD to honor television advertisements that portray disabled people in a positive way. But the airlines are not so friendly to people with invisible disabilities.

From the AAPD article,

“American Airlines has a long history of diversity and inclusion and is proud to partner with the AAPD to establish this award in honor of all of our employees, customers and partners with disabilities,” said Will Ris, American’s Senior Vice President – Government Affairs and member of the AAPD’s Board of Directors. “We want to acknowledge creative companies who are supporting people with disabilities and understand the business value of inclusive advertising.”

American Airlines may have made some headway into supporting diversity and inclusion for some, but definitely not for all. Airports, airlines, air travel in general has become increasingly less accessible. The barriers start before even reaching the gate, security requires increasingly intensive social interaction, communication, and executive function skills. Stewardesses refuse to read written communications. Stewards refuse to allow ear plugs during take off and landing. Passengers talk about how terrible it is to be seated next to an autistic person within the person’s hearing range. Airport assistance is denied if someone can walk, or the person is required to sit in a wheelchair in order to be assisted.

Rettdevil blogged about (safety threatening) incompetence on the part of airline staff,

“but we DID disability training”

Yes, they actually said that to me, after I had a seizure after I had a meltdown because my stupid airline made me miss my flight-I suggested, via someone reading what I was typing (I am always nonverbal post seizure. ALWAYS) that perhaps their front desk people needed some training re: invisible disabilities.

Yes. They do. Why haven’t they?

Airline access is something that is in people’s consciousness. The Oregon Institute on Disability and Development partners with airlines on access issues, and even did a huge study and intervention on airline passenger training.

Excited about this, I approached my contacts and the OIDD, only to find that while originally the accessible airline project was supposed to cover invisible disabilities such as autism, it ended up explicitly excluding them. Specifically, the director of the National Center on Accessible Transportation (NCAT) Dr. Kate Hunter-Zaworski, asked the OIDD to remove from the project anything not related to physically lifting people.

Why?

Accessible transportation doesn’t end at installing a wheelchair ramp. The ADA protects us all. What’s to be done about this?

Taking Action: Higher Education, AUCD, and NCSL

a rolled up diploma with a ribbon around it holding it furledThe Association of University Centers on Disabilities has put together an action to Urge Congress to Fund Higher Education for Students with Disabilities. Background:

Last year Congress passed legislation to reauthorize the Higher Education Act–the Higher Education Opportunity Act. This law includes sweeping new provisions intended to expand access to higher education to students with disabilities, including students with intellectual disabilities. In addition, the law contains provisions to improve the preparation of K-12 general education teachers and college faculty who prepare new teachers in special education and other shortage areas. However, these exciting new provisions require funding to be implemented.

The deadline for action is Wednesday, April 1, so if you’re interested, act quickly!

The AUCD has a number of resources related to intellectual and developmental disabilities in policy, including a section on autism.

For additional autism-related policy information, the National Conference of Sate Legislatures has put up the NCSL Autism Legislation Database (link to database as well as background article and legislative glossary).

Changing People to Fit Jobs, or Finding Jobs to Fit People?

batman jumping against a background of a shiny skyscraper in daytimeIn the less empowering events of my last week, I attended a career workshop that, if nothing else, provided many excellent examples of the gross rift between well-meaning service staff and the people they are supposed to be assisting.

“Say you have a client who only wants to talk about Batman,” the presenter set up the discussion.

The audience, primarily consisting of service providers and parents who referred to the few autistic audience members in third person throughout the day, all had a good, hearty laugh at that. (I was not amused.)

The discussion continued, Oh noes! Only wants to talk about Batman! Whatever shall we do!

Enter: behavior modification, job coaching, rules and rules and rules, hooray!

*head desk*

So shift the context. A person without any sort of disability is seeking career advice. “What are you interested in?” is likely one of the first things asked.

“Well, it’s kind of silly, but I really like comic books, especially Batman.”

“OK, great, have you considered working in a comic book shop?” would be a likely reply.

“Yeah, I considered it, but I don’t really like retail, I’ve never done well with the public.”

“What about working for a comic book manufacturer? Do you have any interest in learning more about printing pre-processing?” the session might continue. Not, “Yes, liking Batman a lot is silly. And don’t talk about Batman to your co-workers either. How about a nice job washing dishes?”

Like anyone, I succeed best at a job that is connected to my interests. I thrive in a corporate environment that is suited to my personality and temperament, and doesn’t require me to conform to mainstream social behavior.

Matching autistic employees with jobs that suit their interests and personalities isn’t radical stuff. Boston University’s ICI reference Supporting Individuals with Autism Spectrum Disorders: Quality Employment Practices starts out saying the same thing,

It is imperative to match the job to the unique set of strengths, interests, and passions that the person with ASD brings to the situation.

From the self-advocate side, Joel Smith has an excellent collection of materials from his 2004 Autreat presentation Making Employment Fit.

So why did the “expert” at the career planning workshop never mention finding work that suited a “client’s” interests? Or finding a corporate environment which is well suited for a person without needing to make large behavioral changes? Or even mentioning jobs outside of custodianship, food service, stockrooms, or assembly lines, all of which have typically mainstream social or corporate cultures?

No way to know for sure, but it’s likely influenced by defect (medical model) thinking about disability. Seeing deficiencies instead of a human being will lead to considering every part of that person, including their interests, as pathology to be avoided or corrected. It will lead to not seeing a person who can benefit from the same type of career counciling as any other person. It will close off creative problem solving process. It will see only limited, stereotyped solutions.

If an autistic job seeker is considered to be just like a non-disabled job seeker with respect to finding a job that suits their interests, skills, and personality, then a comic book shop or printer might be recommended first for the Batman lover, instead behavior modification that denies the person their legitimate interests.

From skimming recent news stories, Wiz Kid Hacker Now Works to Stop Botnet Menace: Hired as Cyber-Crime Expert is one story of what can happen when an autistic person’s interests are channeled into employment that is well suited to their interests and abilities. This story about an autistic man once diagnosed with intellectual disability who is now an Internal Bank Auditor with a Master’s in Accounting is another. And this blog post is yet another.

Self Advocacy in Policy and the New OR Commission

white female with curly hair stands in front of the state capital building in salem oregonI did a few things last week that will likely be blog-fodder for a long time to come, some pleasant, others not-so-much. On the pleasant list was a trip to Salem, my state’s capital, to witness the signing of the executive order (PDF) creating the Oregon Commission on Autism Spectrum Disorder. Here’s the press release (DOC) and some video and print news coverage.

As I wrote about previously, I have a lot of hope for true inclusion of autistic individuals on the policy level in Oregon based on the speedy correction to the town hall invitations to include autistic people, and on the addition of the self-advocate position on the Commission. Being invited to the signing last week also gave me hope as, based on my positive interactions with all involved, I was invited not as a token autie but as a citizen who had successfully participated in the policy making process.

I have hope as well because Oregon has had a good history of self-advocacy and currently has strong self-advocate organizations with members who participate actively in policy making. Self-advocates are also included seriously (as in, important council positions) on the policy level of the Oregon Council on Developmental Disabilities.

While autism, particularly for adults in Oregon, typically falls under the developmental or intellectual disability umbrella, the self-advocates currently included at the policy level of DD/ID programs and in DD/ID legislation tend to not be autistic; we are vastly underrepresented still. Hopefully that is starting to change.

At 9:45 AM in the temporary ceremonial office (the permanent one was still under repairs after a fire), I listened to Representative Edwards and Governor Kulongoski each give short, respectful speeches about the new Committee. I watched Edwards’ autistic son play peek-a-boo with the state government staff. I remembered to take off my hat.

When this whole thing started, I had never been a direct participant in policy before. I had never been to a town hall meeting, had never spoken up to a council or to legislators, and certainly had never thought that I could influence policy at all.

I saw Kulongoski sign the order, which in some small way I’ve been told I did in fact influence, into being.

It is possible for autistic self-advocates to make a difference in policy. And we do not need to be experts at politics to do so–showing up to public meetings and speaking, typing, signing, or showing our ideas, thoughts, and needs can make an impact. If it’s not possible to do this without assistance, seek out local self advocacy organizations which provide direct support to enable us to attend policy sessions. Remember that we have the entire, highly successful, history of the disability rights and self-advocacy movement to draw from, both as a resource, and as a precedent.

Nothing about us without us!

(And if you’re in Oregon, here’s how to apply to the new Committee.)

Monday Autism News Potpourri

a bowl of potpourri from above1. Siblings and Acceptance: Samantha McLeod (13) wrote a book called Normal, in which she sets out to make her autistic brother “normal”–after she figures out what “normal” is. Her conclusion? “‘No one is normal. Everyone is a freak,’ she [Samantha] said.” (Note: I’ve not read the book.) Opposing Views ran a piece on siblings and Media Dis-n-Dat ran a Chicago WLS-TV story on Sibshop.

2. Theatre and Acceptance: Aaron Jungels of Everett Dance Theatre created a multi-media performance piece “Silas the Teenager” inspired by his favorite nephew Silas who is autistic. From the story: “By interweaving video projection, dialogue, choreography, and the use of kinetic-sculptural stage props, Jungels reflects upon the way Silas perceives the world. Excerpts from interviews include the perspectives and anecdotes of Silas’s parents and siblings.” Jungles works with themes of understanding, acceptance, bridge building, and reducing communication barriers.

3. Jessica Park’s Art: The Boston Globe did an niece story on Jessica Park the now older adult who was the basis for the books The Siege and Exiting Nirvana. While the Globe article included a lot about Park’ art and the value of letting people pursue their passions, it does not include any pictures of Park’ paintings–you can see Park’ art at her web site.

4. Dora’s Week Off: I have a lot going on this week–an art show I’m preparing for, a workshop I’m attending, various other unusual obligations sure to make me incoherent. So I’ll be handing my side of the blog over to my good friend Elesia for the rest of the week. I’ll be back with you posting next weekend and will be around during the week in comments.

Disability Models, Tragedy, and Identity

a piece of paper folded into a number of concentric circlesThe social model of disability can be contrasted with the medical model. The medical model views disability as a flaw in a person that can be cured by some form of medical treatment; the social model views disability as a flaw in the way society treats a person that can be cured by some form of accommodation (e.g. the disability is caused by lack of a wheelchair ramp, not by the impairment of being unable to walk). The medical model comes mainly out of early 20th century views about disability and medicine; the social model comes mainly as a more modern reaction to that from the disability civil rights movement. However, there is emerging criticism of the social model from within the disability community, and questioning about its value.

One suggested new model is called the “affirmation model” in the paper Towards an Affirmation Model of Disability (John Swain, Sally French). The authors note that this model is exemplified by the Disability Arts Movement.

A key criticism of the social model presented in the paper is that it’s really just a redefinition of “the problem” of disability–it redefines where the “cure” for disability is (society not medicine) but doesn’t address the notion of disability as a legitimate experience, as part of culture and identity, and as something that can be positive. The social model may reject disability as a personal tragedy, but ultimately it does nothing to directly prevent the view of disability as tragic, shameful, undesirable, or something to be distanced from a person. From the Swain and French paper,

The rejection of a tragic view and establishment of an affirmative model is far more problematic and not centrally addressed by the social model of disability. Essentially, the social model redefines ‘the problem’. Disability is not caused by impairment or a function of the individual, but the oppression of people with impairments in a disabling society. The non-tragic view of disability, however, is not about ‘the problem’, but about disability as a positive personal and collective identity, and disabled people leading fulfilled and satisfying lives. Whilst the social model is certainly totally incompatible with the view that disability is a personal tragedy, it can be argued that the social model has not, in itself, underpinned a non-tragedy view. First, to be a member of an oppressed group within society does not necessarily engender a non-tragedy view. There is, for instance, nothing inherently non-tragic about being denied access to buildings. Secondly, the social model disassociates impairment from disability. It, thus, leaves the possibility that even in an ideal world of full civil rights and participative citizenship for disabled people, an impairment could be seen to be a personal tragedy. There is, for instance, nothing inherently non-tragic about having legs that cannot walk or feel.

From an introduction by Colin Cameron to a poetry anthology (Tyneside Disability Arts (1999) Transgressions (Wallsend, Tyneside Disability Arts). ),

We are who we are as people with impairments, and might actually feel comfortable with our lives if it wasn’t for all those interfering busybodies who feel that it is their responsibility to feel sorry for us, or to find cures for us, or to manage our lives for us, or to harry us in order to make us something we are not, i.e. ‘normal’.

The affirmation model attempts to extend the social model to include disability culture and community, personal identity as shaped by disability and impairment, and personal acceptance of impairment. To say yes, some barriers exist that we need removed in order to have full civil rights. But also to say no, we don’t want to be like the non-disabled people, we are fine with who we are as we are: our impairments are an important part of ourselves and our lives.

While the social model may be useful for identifying and removing access barriers, it may ultimately fall short of accurately modeling the experience of disability.

Accommodations and “Special Treatment”

a door opening, there is light in the opening nothing else distinguishableOne excuse for not providing disability accommodations is that they somehow don’t exist in the “real world”, which is a misinformed perspective on the way disability accommodations function in society (e.g. handicapped parking spaces and closed captioning are undeniably part of the “real world”). Another misinformed excuse for not providing disability accommodations is that they are “special treatment” or somehow give a person a distinct advantage over others. These excuses may be more prevalent for a person with an “invisible disability” such as a learning disability or autism.

An article Boston U student with a learning disability explains that accommodations are not “special treatment” says,

However, she said the most frustrating challenge for her is the general perception of students with learning disabilities.

“People need to realize that one, we’re not dumb, and two, that students with learning disabilities don’t get special treatment,” Fleishaker, who was diagnosed [with dyslexia] in the 8th grade, said.

Disability accommodations are intended not to give an advantage, but to “level the playing field.” If it takes a person twice as long to read and understand the questions on an exam, then they will not have the same amount of time as the other students to actually answer the questions. Extra time on an exam does not give that student more time to answer the questions, it gives the student the same amount of time as the other students to answer the questions. This same idea extends into the workplace.

Like anything, the misperception of accommodations as advantages particularly for people with learning or cognitive disabilities probably happens for a variety of reasons. Invisible disabilities are difficult for people to understand as it is hard for anyone to imagine cognitive experiences that they themselves have never had. The types of accommodations that help people with learning or cognitive disabilities are often ones that would give an advantage to a person who did not have a disability (unlike accommodations such as an ASL interpreter or first story building access which are unlikely to give an advantage to a person who does not need them). Also, there is a mandate for all individuals to be held to the same academic or work place standards, and there is often fear on the part of instructors or employers that academic or work place standards would be compromised by the accommodation.

The BU article also touches on something that has come up in the context of ADA and service dogs: people abusing systems meant for accommodating disability in order to actually get special treatment or an advantage. Is there proof that this truly happens with sufficient frequency to justify the level of fear it invokes?

This issue is of concern because the more precautions that are taken to prevent systemic abuse, the more difficult it is likely to become for people who legitimately need accommodations to get them. Especially for people who have difficulty with communication, organization, language, or social interaction, putting together accommodation eligibility materials may become an accessibility barrier in and of itself.

Autistic Adult Outcomes in Utah

a drawing of utah showing fanciful depictions of major landmarks, the borders with other states are written inA 20 year later follow-up study in Utah on individuals diagnosed with Autistic Disorder from DSM-III (more restrictive criteria) and a nonverbal (for people with limited verbal ability) or full scale IQ ≥ 70 as children, lead by Megan A. Farley, has produced some interesting results about quality of life and autistic development. The aims of the study were (quote from the study itself),

Our aims were to (1) define current function and service needs; (2) explore the feasibility of studying a larger statewide sample; and (3) examine relations among historical and current variables not reported in other recent outcome studies.

“Historical and current variables” meant things measured for the participants as children and adults, for example IQ and adaptive skills including daily living, social, and communication.

The study found that current daily living skills (including with support) were stronger predictor of outcome than childhood IQ, verbal ability, or other variables measured in childhood or adulthood.

The study also speculated that the strong community-centered culture of Utah might have played a role in why this group had better outcomes than autistic adults who participated in other similar studies. Again, from the original study (“the participant” is the autistic person participating in the study),

Another possible factor is the support of the LDS communities in which many participants grew up and continue to live. The church building that members attend is determined by their address; thus, children go to school, attend church activities, and reside in a neighborhood as a cohort. Inclusion of individuals with disabilities is a strong LDS cultural value. Parents attend services and activities with their neighbors, sharing joys and concerns about their families. Families are often large, and in many cases a sibling’s social circle extended to include the participant. Some participants had assistance finding work through these networks.

According to the lead researcher (source),

“This is an amazing group of people who, in many cases, did a lot more than their parents were told they would ever do,” Farley said of those who participated in the follow-up study. “This gives a lot of hope for younger people with autism and average-range IQs.”

“Outcome” in this study was defined mostly by employment, number and quality of social relationships, and residential situation. There has been some criticism of the use of these types of items as outcome measures, as they assume that all people value these things in their lives, or that these items correlate somehow to overall well-being, but that’s perhaps a topic best left for another post.

More on topic to this post is what the University of Utah site says about the usefulness of studies such as these (source),

The long-term follow-up also will help researchers identify issues that affect the social outcomes of adults who were diagnosed with autism as children, providing information that can help determine services that will help these adults lead more fulfilling lives.

Faces of Prosopagnisa

four versions of a young white blond female, left to right and top to bottom: high contrast sepia tone, black and white, posterized, regular photoProsopagnosia (face blindness) is difficulty in recognizing people by their faces, even people who are well known such as a parent or spouse. Many people on the spectrum report prosopagnosia and there are claims that prosopagnosia is more prevalent in the autistic population than it is in some other groups (though I haven’t seen any references to actual studies). Prosopagnisa is generally thought to be a brain thing because people can acquire it after a head injury or stroke.

A new MIT study on facial recognition (or lack thereof) in photographic negatives found that the structures around eyes seem to be important in facial recognition. The article that’s been circulating about the study speculates,

Other studies have shown that people with autism tend to focus on the mouths of people they are looking at, rather than the eyes, so the new findings could help explain why autistic people have such difficulty recognizing faces, says Sinha.

I’d speculate further that anyone who has difficulty making sense of visual stimuli is likely to have trouble recognizing faces.

Joel Smith has written some informative articles about face blindness and some strategies for living with face blindness, from an autistic perspective.