Disability Futures

Today, India and 21 other nations will begin a new era in accessible books.

Through ratification of the Marrakesh Treaty, which officially comes into force today, millions of people who are visually impaired or otherwise unable to read print materials will now enjoy increased access to braille, audio and other accessible book formats.

A groundbreaking international agreement, the Marrakesh Treaty creates exceptions to intellectual property law that allow accessible versions of copyrighted books to be produced and distributed, both within countries and across international borders.

As these reforms take effect in the 22 ratifying countries, readers with visual impairments should find it increasingly easy to buy or borrow books in accessible formats.

“This treaty will definitely help,” said Devadoss, who is currently enrolled in Perkins International’sEducational Leadership Program. “Access to information is so essential for developing new ideas and building your relationship with the world. It’s the right thing to do.”

The United States has not yet ratified the Marrakesh Treaty. The agreement has backing from the Obama administration but still requires approval in the U.S. Senate. Perkins School for the Blind has made advocacy information available for individuals who support everyone’s right to read.

Meet Isabella Springmühl, a Guatemalan goddess with Down Syndrome taking the fashion world by storm. Since the young fashionista started designing clothes for her dolls at 6 years old, Isabella wanted to be a fashion designer. Following in her grandmother’s footsteps, Isabella applied to studyfashion design in her native Guatemala but was rejected because the schools viewed Down Syndrome as a liability.

That didn’t stop Isabella from pursuing her dreams. The 19-year-old slowly built an impressive portfolio and eventually the fashion world took notice. Isabella made herfashion debut at London Fashion Week earlier this year.

“One of my dreams was to be able to design beautiful and fashionable clothing for youngsters and adults with Down syndrome. Because of the physical characteristics we have, sometimes it is quite difficult to find nice clothing that fits us well.”

Hoge was born with deformed legs and a giant tumor between his eyes. "The tumor formed really early during my development," he tells NPR's Rachel Martin. "So it subsumed my nose and pushed my eyes to the side of my head, like a fish, and made a mess of my face, as you'd expect."

Hoge lives in Brisbane, Australia, with his wife and two daughters. His new book, for readers age 8 and up, is called Ugly.

On how he explained his deformities to other kids growing up

Normally with one quick and short answer. So, you know, kids would ask me, "Why have you got bumps on your head?" or "Why have you got a squished nose?" or "Why don't you have any legs?" And I would simply say, "I was born that way." And probably nine times out of 10, the questions wouldn't go much further than that. ... That satisfied them, and it certainly satisfied me.

On going against his doctors' advice when he decided to opt out of the surgery

I have genuine love and affection for the massive changes all of the doctors and nurses who worked on me made to my life. But doctors are tinkerers. They're always in the back shed thinking, "If we moved that nose up half an inch, it'd look so much better." But I think, you know, thinking about it now, I'm never going to look like Brad Pitt or George Clooney, so I think I should just stick with my rather distinctive face and go from there.

Today disability advocates mourn the death of Jerika Bolen, a 14-year-old black, gay teen with spinal muscular atrophy type II (SMA), who died in hospice after requesting help to end her life. Earlier this summer, a call for donations to support her dream of a “last dance” prom in her honor focused national media attention on her request to die, which was characterized in the media as “brave” and “inspirational.”

SMA Type II is not a condition that is typically fatal in children and teens. In fact, while some people with SMA die in younger adulthood due to respiratory complications, people with type SMA Type II often live into their 60s and beyond.  Certainly, SMA would not result in the death of a fourteen-year-old who is receiving appropriate medical care. Our experience as disability rights advocates, many of whom have SMA and similar neuromuscular conditions, is that people with Type II SMA and the level of function that Jerika had as a teenager live long into adulthood.

What was the cause of Jerika’s reported extreme physical pain? Contrary to media misinformation, pain is not characteristic of SMA Type II, so what caused her pain?

Did Jerika have any competent doctors who specialized in SMA Type II or neuromuscular disabilities?

What explains the reported 30-38 surgeries that Jerika experienced between ages 8 and 14? This number of surgeries is highly unusual for people with SMA Type II. Were these surgeries the source of her pain?

Were pain relief experts ever consulted to address Jerika’s pain? Why did she wait to take medication until her pain was at a level 8 or higher on a scale of 10, while pain management physicians advise taking medication much earlier, “nipping it in the bud” to prevent pain from reaching that level?

Given the well established ways that suicidal ideation in teens is addressed to prevent tragedy, what forms of counseling or support were enlisted to address Jerika’s desire to die?

Was any qualified professional trained in teen suicide prevention brought in to counsel Jerika? Were any professionals working with Jerika aware of studies finding that quality of life is not correlated with physical impairment or use of non-invasive breathing support?

From whom did Jerika get the idea that she could go into hospice and get assistance to end her life? She had reportedly spoken of this off and on for a few years. What were the motivations of any adult who gave such an idea to a child?

Was any qualified professional with a similar disability, someone familiar with the emotional issues facing a black, disabled, gay teen, brought in to counsel Jerika?

Why do Wisconsin governmental authorities allow children with non-terminal disabilities to have their lives ended based on adult decisions to withhold medical care, while this is not permitted for non-disabled children?

What were the qualifications of the doctor who ordered hospice for Jerika? Was it the same doctor or facility that conducted the extreme number of surgeries?

Why would a hospice provider participate in ending the life of a child who is not terminally ill? Besides discontinuing Jerika’s nightly bipap breathing support, what additional steps resulted in her death after only 18 days from her scheduled entry into hospice?

Let me say that again: in my left-wing dream of a liberal arts education, the kind that prides itself on exposing and unpacking prejudice, no one told me ableism existed.

That’s because it’s still completely acceptable for disabled people to hate ourselves. Expected, even. Most discussions of ableism prioritize its external forms: staircases without ramps, misguided offers of help, applauding disabled people for being “so brave.” Disability itself remains something we “tolerate” or “live with” (but would, of course, “fix” if we could). That kind of ableism – that turns us against ourselves by lying about what success, politeness, health, and independence look like – isn’t broadly acknowledged as internalized oppression yet. But we can still start unlearning it.

ACL is excited to announce the first-ever grant to establish a National Resource Center for Self-Advocacy (NRCSA) to empower people with intellectual and developmental disabilities (IDD) for enhancing their voice on issues important to their well-being and daily life. Self Advocates Becoming Empowered (SABE) will lead the effort in partnership with several organizations.

The self-advocacy movement is a human and civil rights movement, stemming from the civil rights movement of the 1960’s, but led by individuals with intellectual and developmental disabilities to ensure they have the same rights, responsibilities, and opportunities as people without disabilities. Starting internationally more than 40 years ago, the movement has empowered individuals to make choices in their lives, provided opportunities to have a voice, and opened pathways for leadership development.

“The people affected by policy should have the greatest voice in developing it,” said Katherine Cargill-Willis, Program Specialist with AIDD. “With this grant, ACL aims to make this ideal more of a reality for people with disabilities.”

Self Advocates Becoming Empowered (SABE) will lead the effort as part of a $2 million, five-year cooperative agreement funded by ACL under the Administration on Disabilities as an AIDDProject of National Significance. Partner organizations on the new resource center include:

• Autistic Self Advocacy Network (ASAN)
• Green Mountain Self Advocates (GMSA)
• Heartland Self-Advocacy Resource Network (HSRN)
• North East Advocates Together (NEAT)
• Pacific Alliance
• Project Action!
• Our Communities Standing Strong (OCSS)
• Southwest Alliance
• Southwest Institute for Families and Children (SWI)
• TASH
• University of Missouri-Kansas City Institute for Human Development (UCEDD) (UMKC-IHD)

Employers need to be aware that allergies to fragrance or multiple chemical sensitivities can be disabilities under ADA, the Americans with Disabilities Act. 

This was amply illustrated in a recent post on McBride v. the City of Detroit that ruled senior city manager Susan McBride’s chemical sensitivity was a disability under ADA because it interfered with the major life activity of breathing. 

One of the major problems in that case was that the HR department for the City of Detroit simply refused McBride’s request, without any interactive process to uncover a reasonable accommodation. 

According to the Job Accommodation Network or JAN, there are a number of ways that employers can accommodate workers with fragrance allergies or chemical sensitivities. JAN is a great resource for any employer dealing with an accommodation issue under ADA. 

In the JAN guide on fragrance sensitivities, the non-profit organization suggests that employers take a number of steps before implementing a fragrance-free workplace. These include maintaining good indoor air quality an air purification system. Often, moving the disabled employee’s workstation or modifying his or her schedule is helpful. Employers should consider allowing the employee to communicate with coworkers by Skype, telephone or email, rather than face-to-face. 

The most extreme accommodation is to implement a workplace policy asking or requiring all employees to use on fragrance-free products. This includes abstaining from perfume, cologne and aftershave as well as scented soaps and deodorants, and even using unscented laundry soap. 

After the lawsuit with Susan McBride, the City of Detroit added the following section to its ADA Handbook: 

“Our goal is to be sensitive to employees with perfume and chemical sensitivities. Employees who are sensitive to perfumes and chemicals may suffer potentially serious health consequences. In order to accommodate employees who are medically sensitive to the chemicals in scented products, the City of Detroit requests that you refrain from wearing scented products, including but not limited to colognes, after-shave lotions, perfumes, deodorants, body/face lotions, hair sprays or similar products. The city of Detroit also asks you to refrain the use of scented candles, perfume samples from magazines, spray or solid air fresheners, room deodorizers, plug-in wall air fresheners, cleaning compounds or similar products. Our employees with medical chemical sensitivities thank you for your cooperation.”

https://goo.gl/JdlIse

The Fair Housing Act (“FHA”) prohibits discrimination in the sale, rental, and financing of residential housing based on race, color, national origin, religion, sex, familial status and disability. Although the non-discrimination concept embodied within the FHA is relatively straight forward, application of the law to real world situations is not always as clear cut. This article discusses the interplay between the FHA and service animals by examining a few of the more commonly raised questions when a potential tenant with a disability seeks housing along with his/her furry (or not so furry) companion.

When verifying service animal status, housing providers are not given blanket authority to ask for and receive any amount of information they desire from the potential tenant. Housing providers can request reliable documentation establishing that a potential tenant has a disability (if the tenant’s disability is not readily apparent) and/or the service animal assists the potential tenant with management of his/her disability (if the need for the service animal is not readily apparent).

ADVOCATE'S GUIDES

Sensory overload happens when too much sensory stimulus is occurring at once — it can be triggered by a crowded room, a TV turned up too loud, strong aromas, fluorescent lighting and much more. It’s often associated with certain diagnoses like autism, sensory processing disorder, chronic fatigue syndrome,fibromyalgia and post-traumatic stress disorder, although anyone can experience it.

Music is not always a reliever to sensory overload — in fact, sometimes it can make it worse, so you should ask your loved one on the spectrum if playing a song helps or hurts. But for a lot of people with autism, music works wonders when they are trying to calm themselves down. We asked our readers on the spectrum who use music as a tool to share what songs they play if they’re experiencing sensory overload or melting down. We’ve dropped a Spotify playlist at the bottom of this post if you’d like these songs in one place.