Disability Futures

Wonder the goldendoodle reached the peak of the U.S. judicial system on Monday with a U.S. Supreme Court case potentially crucial to disability rights.

Few lawyers, let alone canines, ever snag a bone this big.

Now semi-retired as a service dog, Wonder’s work for a young Michigan girl with cerebral palsy set in motion the legal proceedings that culminated in an hour’s worth of mostly technical oral argument Monday morning. Facing some poignant facts, justices stuck closely to the dry but significant basics.

Wonder provided a different kind of service for Ehlena Fry, who is now 12 and who is identified in court proceedings as “E.F.” Ehlena and her parents were in the courtroom Monday for the hourlong oral argument.

In 2009, when she was 5 years old, Ehlena obtained Wonder with the help of community fundraising. The dog helped her in a number of ways, from retrieving dropped items and helping her balance when she used her walker to opening and closing doors.

School district officials in Jackson County, Mich., eventually blocked Wonder from accompanying Ehlena, citing the potential for distractions to other students, among other reasons. The family subsequently home-schooled Ehlena, and later moved to nearby Washtenaw County, where she and Wonder were both permitted to attend.

The specific question facing the eight justices Monday was whether Ehlena’s family first had to exhaust administrative remedies under the Individuals with Disabilities Education Act before they filed federal suit under the separate Americans with Disabilities Act.

Under the terms of a consent decree that resolves discrimination claims brought by the Justice Department, Greyhound Lines Inc. has hired a claims administrator to distribute compensation to people who experienced disability discrimination while traveling or attempting to travel on Greyhound. 

• have a disability;
• have traveled or attempted to travel on Greyhound between Feb. 8, 2013, and Feb. 8, 2016;
• have experienced a disability-related incident during his or her travel or attempt to travel (for example, lack of accessible transportation or transportation-related services, Greyhound’s failure to make disability-related accommodations, etc.); and
• submit a claim form by mail, email or online to the claims administrator by no later than Nov. 10, 2016. Help is available from the claims administrator for those who are unable to complete the claim form due to a disability.

• Online:       www.DOJvGreyhoundSettlement.com[external link]
   
• By Email:   GRYsettlement@classactionadmin.com
  Email links icon
   
   
• By Phone:  Telephone (toll-free): 1-844-502-5953 / TTY Telephone (toll-free): 1-800-659-2656
   
• By Mail:     U.S. v. Greyhound Claims Administrator

Members of Congress are pressing the Obama administration to issue guidance clarifying that life-saving organ transplants should not be denied because of a person’s developmental disability.

In a letter sent this month to the U.S. Department of Health and Human Services’ Office for Civil Rights, 30 members of the U.S. House of Representatives urged the agency to address what they called “persistent” organ transplant discrimination.

“Unfortunately, many transplant centers and surgeons continue to refuse to provide access to transplant registries and transplantation surgery to qualified people with disabilities,” reads the correspondence to Jocelyn Samuels, director of the Office for Civil Rights.

No one should be denied their right to life simply because of their intellectual and/or development disabilities,” the lawmakers wrote.

In recent years, a handful of high-profile cases have highlighted the disparities faced by people with developmental disabilities needing organ transplants. In 2012, then-3-year-old Amelia Rivera, who was diagnosed with intellectual disability and Wolf-Hirschhorn syndrome, was initially denied a kidney transplant, but doctors reversed course amid public outrage. In a separate case later that same year, the family of Paul Corby said that his autism diagnosis was cited when he was turned down for a heart transplant.

Contrary to much media spin, autism is neither a tragedy nor a looming public health crisis. Autistics have always been here and research over the last decade has shown that while diagnosis has increased over time, the actual percentage prevalence of autism has not risen.1 What is a tragedy is how underserved we are. I am a 49-year-old Autistic and I have spent much of my adult life homeless and hungry because, like so many of us, I was sliding through the cracks; one agency would turn me away for being “too high functioning” and another would turn me away for being “too low functioning.”

I had a very hard time in school and left unprepared for independent living, higher education, or a career. I could make it through an interview for a minimum wage job but couldn’t manage to keep those jobs for more than a couple of weeks before I was “let go” with no explanation. Since my lack of formal education only qualified me for the lowest income employment to start with, I couldn’t keep a roof over my head. Being forced to change jobs two to four times per month left too many gaps in an hourly wage that was already painfully low.

My disability-related poverty is more than just a personal anecdote. The U.S. Census Bureau has statistics about poverty and disability that are jaw-dropping: at the same time that the overall poverty rate in the U.S. dropped to 14.5%, the poverty rate for disabled people rose to 28.8%. My struggle to provide for myself is echoed by a U.S. study that found that only 17% of Autistic adults between the age of 21 and 25 have lived independently, compared to 34% of non-autistic 21- to 25-year-olds with intellectual disability.2  I may not have been living with parents or in a group home or institution, but sleeping in the park and eating from dumpsters is not exactly what I would call “independent living.”

It's been well over a year, and I've blasted social media about this twice, but no autism organization has bothered to even mention it. So I'm going to write once more about the murder of Charnice Milton because Charnice Milton was young, Black, talented, and Autistic.

Charnice was the victim of a drive-by shooting in the neighborhood she dedicated herself to getting voices heard about. She was used as a human shield in a violent exchange that had nothing to do with her. Southeast D.C. still mourns her. The police are asking the pubic's help in finding her murderer.

Her parents discussed her diagnosis, which at that time was labeled Aspergers, and how no one ever thought she'd complete school, much less end up with a masters degree in journalism. Like some African American parents, they spent the next months vacillating between the truth of admitting she was autistic and saying she "had Asperger's like symptoms" when the love for her work and for her by her peers and community overflowed such that her murder became the subject of articles in The Washington Post and The New Yorker.  They rethought their initial admissions and made efforts to mute her autism from the story of her life rather than celebrate the brilliance of her short career as a disabled journalist. But their initial admissions are there in interviews for local television stations.

Meanwhile, all autism organizations remained silent on her murder. There were neither statements of loss nor demands for justice. No hashtags flooded Twitter. The first anniversary of her murder was on May 27th. I was in the hospital and could not attend her vigil. To my knowledge, no representative of any autistic organization did either.

I used to write one of these blog posts each time a Black autistic adult or child was murdered simply to force attention on these events and make the deaths of autistic people of color matter as much as white autistic children. The hypocrisy of being an autism organization and ignoring the murders of Black autistic people but claiming to speak for autistic people of color is something I've hammered on for 5 years.

I shouldn't have to .

If you use plain language to describe and discuss even complex theories, more people will be able to read your writing. Not everyone will believe this is a good thing. There are historical reasons for this, and some of these reasons are compelling in the lives of people living and working in today’s economy.

In terms of access and justice, using plain language is very important. It’s needed to allow the widest variety of people with disabilities to participate in conversations about themselves. We cannot allow certain disabilities to stand in for others. Neurodivergent people (those of us whose brains are wired differently), for example, have different access needs from one another and from people whose access needs are orthopedic or purely sensory.  First we must understand some more about some of the potential barriers if we are to make progress solving these access barriers.

What happens is that in-group languages, jargons, and other forms of writing that block out a lot of people from being able to read texts written by academic specialists also serve to mark the writers as belonging to special subgroups or schools of thought. These language differences are a quick way of showing the reader that the writer is a legitimate member of the system. Not only that, but an experienced reviewer can pinpoint almost exactly who the writer is, if not precisely who, by looking first at the language and then at the other writers cited and the topic of the paper combined with the language information.

When the reviewers send notes back to the original writers, the writers can tell fairly easily  who reviewed their papers, if they want to, based on the commentaries, which will be written in a similar or adjacent form of jargon, and might say certain experts or methods needed to have been included or so forth, which tips you off to their subgroups. Then you can look them up on a list within the journal’s information and easily find out exactly which person they are based on their interests.

Writing in plain language makes all of this nearly impossible and marks you as an outsider. That’s part of why we do not see it happen more often in certain fields of academic activity. People are afraid they will not get published at all.

When Anthony Tusler went to San Francisco for a rally in 1977 with his Pentax Spotmatic camera and a roll of black and white film, he had no idea that he would be documenting a defining moment in disability rights history.

Tusler stayed only for a few hours, long enough to capture 36 shots of the diverse crowd staging the April protest at the Health, Education and Welfare building in San Francisco before heading back to his post as the co-founder of the Disability Resource Center at Sonoma State University and his work advocating for equal access and rights.

But, the protest lasted on, evolving into a 26-day sit-in that’s credited with spurring Joseph Califano Jr., then-U.S. Secretary of Health, Education and Welfare, to sign into law the anti-discrimination safeguards of Section 504 of the Rehabilitation Act of 1973, giving people with disabilities civil rights protection under the law for the first time. The sit-in, which is one of the longest occupations of a federal building in history, is regarded as a precursor to the passing of the Americans with Disabilities Act in 1990.

Nearly four decades later, the 69-year-old Penngrove resident’s photos, which have become a prominent symbol of the protest, are on display as part of the upcoming “Patient No More: People with Disabilities Securing Civil Rights” exhibit at Santa Rosa Junior College. His images have also been donated to the University of California, Berkeley’s Bancroft Library and were incorporated in a larger 2015 exhibit at The Ed Roberts Campus to commemorate the 25th anniversary of the passing of the ADA.