Disability Futures

College freshman Mia Barone’s fingers are flying in the campus library, her eyes closed as she signs the words on her study list — tomorrow, free, champion, flirting.

The 18-year-old with hot pink streaks in her hair that match her fingernails has a gift for sign language. Barone, who has Down syndrome, began learning to sign as a baby and hopes that after she graduates from the University of Colorado at Colorado Springs she will work as an interpreter or children’s sign language teacher.

Barone is among the first cohort of college students in Colorado with Down syndrome and other intellectual disabilities, a result of the state’s delayed response to the 2008 federal Higher Education Opportunity Act that said people with intellectual disabilities have the right to attend college. Colorado was among the last four states to comply when the legislature and Gov. John Hickenlooper this year approved $75,000 per year for four years for each of three schools — UCCS, University of Northern Colorado in Greeley and Arapahoe Community College in Littleton.

This fall, Barone is one of three students attending the Colorado Springs campus through its new Office of Inclusive Services. UNC has four students enrolled, including two who live in on-campus dorms, in its new pathway for students with intellectual disabilities called GOAL — Go On and Learn. Both universities plan to increase enrollment to about 40 students within four years, when state funding runs out and the schools have to fund their offices through tuition and donations.

It is admittedly an odd title. A musical about assisted suicide?!? The description of the musicalfrom the Southbank Centre is well worth a visit. There is a short 2-minute video (audio described and subtitled) with Liz Carr giving her reasons for the show herself. Some of my friends raised their eyebrows when I said I was excited to get a ticket to see the fabulous Liz Carr performing in that spectacle. Even more wonderful is that I would be joined by a few new Canadian friends who would discuss the show with me over a bite later in the evening to give me a North American take on it. After all, I am writing this review for Alice Wong and the Disability Visibility Project based in the US.

I find the show is imbued with the character of Liz Carr herself – her acerbic wit, her passion, ingenuity, anger, compassion and dare I say, vulnerability, shone through. She is well known for playing forensic examiner Clarissa Mullery on the BBC drama Silent Witness, a regular in the comedy line-up Abnormally Funny People, and previous co-host of BBC Ouch! She is also a campaigner at Not Dead Yet, an international network of disabled people opposed to the legalisation of assisted suicide.

It’s not generally acceptable in my segment of the disability community to harp on our defenselessness. Rather, the idea is to assert core competencies, to distance ourselves from the Jerry’s Kids’ model and anything else remotely pitiful. We seek fair treatment, rightful access to everything in society — jobs, romantic prospects, and so on. Highlighting the downside of disabilities seems counterproductive and self-pitying.

But the truth is, to live with a disability is to know an abiding sense of fragility. That isn’t always easy, but it’s not necessarily all bad either.

I decided long ago that if I’m going to like myself, I have to like the disability that has contributed to who I am. Today, my encroaching decrepitude is frequently a source of emotional strength, a motivator to keep fighting, to exercise my full abilities in whatever way possible. Let’s face it, people with disabilities are nothing if not first-class problem-solvers. We find all manner of devices to enable us to raise a fork, drive a car or van, go to the beach. I now control my electric wheelchair with my lips, because my hands no longer function. These very words are being written with a voice-recognition computer.

Not long after the shock of Laurie’s fatal accident, the news came of a 14-year-old Wisconsin girl with S.M.A., Jerika Bolen, who was planning to end her own life by refusing life-sustaining treatment. Just a few weeks ago, she did, and died. News reports said that Jerika was comforted by the promise of an afterlife in which she would be able to move freely and escape her persistent physical pain.

My reaction to this is strong and difficult to express. Growing up with a disability, I often became isolated. Feeling devalued by my peers, with no confidence in my future, I experienced intermittent but profound depression. One can take only so many surgeries, so many bodily betrayals, so much rejection, before wanting to give up. Even today, I can pivot from utter terror over an itch I can’t scratch or a bite of food I can’t quite swallow, to almost unbelievable joy if I manage to clear my throat unassisted or zoom my motorized wheelchair through a crowded street. As disabled people, we are endlessly buffeted by circumstances beyond our control.

I dare not judge Jerika Bolen. I don’t know the entirety of her situation. But I do wish she had found the will to live. I’m saddened — as were many others with S.M.A, and some disability rights groups — to think others might grow so weary or apprehensive that they follow her example. I hope she received the same level of intervention any other suicidal 14-year-old would. I wish I could have told her about the psychological alchemy that can turn frustration into an internal fuel. If I’d had the chance I would have told her that society needs its disabled people, too.

ll parents want to see their children marry happily and start a family. But when the couple has Down syndrome, the situation is profoundly complex.

Michael Cox and Taylor Anderton have been dating for almost two years and engaged for one.

The Queensland couple burst into the national spotlight in May when an ABC news video about their romance was viewed online more than 13 million times.

Michael and Taylor's parents have recognised the pair are happy together, but said they cannot support their dream of starting a family.

"Taylor and Michael want to get married and have children and that makes me feel very worried, apprehensive and concerned," Taylor's mother, Catherine Musk, told Australian Story.

Michael and Taylor have agreed to delay their wedding, but remain determined to eventually have children.

"We want to have four kids," Michael said.

"We're going to have three daughters and one son.

Disability advocates said the decision on parenthood should rest with the couple.

Queensland Advocacy Incorporated director Michelle O'Flynn said people with disabilities were entitled to "bodily integrity".

People … like Michael and Taylor are certainly entitled to the freedom to do with their bodies as they wish and that includes reproduction," she said.

We have been engaged in a public effort to make our data more consumable for more parts of our country, and to better democratize our data.

To that end, we here at the Department of Commerce are excited to support the development of voice recognition tools such as the Amazon Alexa Skills Kit, which further democratize access and open public data for everyone’s benefit.

Commerce Secretary Pritzker has made the President’s Open Data vision a pillar of her “Open for Business” strategy for the department. Given all of Commerce’s incredible data, the vision has been to make this data more consumable, and to bring a data-driven approach to our own operations.

On Oct. 7–8, software developers and civic hackers are invited to build innovative solutions that connect open data with voice recognition.

The “Alexa Skills Open Data Challenge” will be held at Amazon’s headquarters in Seattle, Washington. To support participants, Commerce will showcase its vast, open datasets and provide in-depth technical assistance through the Department’s digital service shop, Commerce Data service, along with support from bureaus like the U.S. Census Bureau.

By leveraging Commerce’s extraordinary open datasets, the following scenarios are possible with data from the National Weather Service, the National Oceanic and Atmospheric Administration, the U.S. Patent and Trademark Office, the Bureau of Economic Analysis, and the U.S. Census Bureau:

• Agriculture: Plan a crop harvest more effectively by understanding weather forecasts
• Recreation: Plan a fishing trip or surfing recreation by understanding tide and marine conditions
• Innovation: Determine which cities generated the most patents
• U.S. Demographics & Economics: Ask questions related to population, median income, and more

NPR caught flak from the disability community this week as they published an article reporting on a medical study supporting physical activity as a means of delaying or preventing mobility impairment in sedentary seniors. “Nobody wants to spend the last few decades of their lives in a wheelchair,” NPR’s caption, since edited, declared. “LOL guess I missed the boat here. Oh well. ¯\_(ツ)_/¯” activist Emily Ladau snarked. “Anyone can become disabled at any given time,” another wheelchair user pointed out. “Just say exercise is healthy. Don’t drag us disabled people into it.”

There are so many ways in which health coverage can be more sensitive and aware of a disabled audience—and we are part of the audience of health coverage, despite the implicit assumption of many articles that journalists are writing for a nondisabled audience. Language, while important and indicative of a writer’s attitude toward the subject, is only one element of disability-aware health coverage, and I recommend, as I do to everyone who publishes about disability, the National Center for Disability and Journalism’s style guide, which covers many aspects of disability typically not mentioned in AP or in-house style guides.

The sad reality is that much of our medical system, which by rights should be one of the most supportive environments to disabled people, is instead one of the most hostile and stigmatizing. This extends to medical research as well, where implicit bias against disability and disabled people impact everything from study design to topics chosen for study in the first place, as this study illustrates all too well—more on that below.

At least eight people have been fired due to alleged abuse at a center for the disabled in Pueblo where staff told investigators that “paranormal activity” was to blame.

The U.S. Supreme Court announced Thursday that it will hear a potentially groundbreaking case brought by a Douglas County couple who claim that their autistic son was not provided an adequate education in the public school system as required by federal law.

The high court’s ruling on the case, which likely wouldn’t come down until next year, could have substantial implications for students with disabilities across the country in terms of the standard school districts will be required to meet when providing instruction and services. At issue is whether schools must provide an education equal to other students.

The roots of the case go back to 2010, when the Highlands Ranch couple pulled Endrew, now 17, out of Summit View Elementary after he began to exhibit severe behavioral issues, including banging his head, dropping to the floor, disrobing and running away from school. Convinced the school wasn’t doing enough to help their son progress academically, the couple pulled him out of Summit View and enrolled him in Firefly Autism, a Denver school that specializes in working with autistic children.

The parents, who said their son has made progress in his learning since attending Firefly, asked the district to reimburse them for the tuition they paid for Endrew’s private schooling. They claimed that the Douglas County School District did not do enough to provide their son with a “free appropriate public education” as required by the 1975 Individuals with Disabilities Education Act (IDEA).

But an administrative law judge, a federal judge and the 10th U.S. Circuit Court of Appeals backed the district, claiming in separate rulings that the federal statute only requires that schools provide students with “some educational benefit,” a standard they determined Douglas County had met with Endrew.

Since the opening of the first Centers for Independent Living in the early 1970’s, there has been a mandate for each center to provide four core services. PACE provides these services and they are Advocacy, Information and Referral, Skills Training, and Peer Counseling. Recently through the Workforce Innovation and Opportunity Act, an amendment has been made to add a fifth core service: Transition.

One type of transition is Reintegration. Over the years the Centers took issue with their peers being financially trapped in nursing homes – yes, that happens. People have the ability to live independently in the community with supports such as home services, personal assistance, emergency response systems, and accessibility adjustments in their home. When these issues are addressed, a person can return to the community to live independently. Centers have seen this and advocated for it for years, each Center talking to their legislators and educating them as to how this allows the person to regain control over their lives. Beyond that, it costs the State less than institutionalization by about one third. Seemed like a no brainer but the bureaucracy needed time to grow too for the government to get in on it.

Now centers also include Youth Transition from school to work or continued education. PACE is currently applying for funding to allow us to work with young people who want to make that transition. A center in Rockford has been working in this area and has developed a curriculum they use in the schools to prepare kids for decisions regarding work or continued education. Through this program, kids get a chance to meet and talk to their adult peers who have been through those transitions and see employed people who have disabilities as their role models. They can think about how they would adapt the work or learning environment, whether to disclose a disability to an employer, and other questions not usually offered by traditional education. As you would expect, that can be a powerful motivator. As for schools, they will get to hear from the adult peers as well – peers who have already been through those systems – which in turn helps the schools learn how to better assist students with disabilities navigate their transition from high school to work or higher education.