To go from her second-story bedroom to her second-story bathroom, Christine Hoag had to crawl. The bathroom doorframe was not wide enough for her wheelchair to fit through, the hall was too narrow for her chair to turn around and the bathroom itself was so cramped she could barely move between the tub and toilet.
“It felt like I had lost every shred of my dignity,” she says. She also, because of the crawling, had suffered multiple back injuries.
Hoag has Shy-Drager syndrome, a nervous system disorder with symptoms that resemble Parkinson’s disease. A related condition causes low blood pressure and tachycardia, which can produce lightheadedness and put her at risk of falling every time she transitions from sitting to standing. For a proudly independent entrepreneur who once founded her own home care company, the prospect of moving to a nursing home was not appealing. “I want to stay in my home,” she told me, and “have a nice quality of life as long as I’m here.”
The question, “Are you thinking of killing yourself?” feels rather unsettling. A few months ago, I became a Youth Mental Health First Aid (YMHFA) instructor with 13 of my colleagues in the state of Delaware. We practiced asking our peers this challenging question and it didn’t get any easier each additional time we said it out loud. In 2017, more than 47,000 people in the U.S. died by suicide, making it one of the leading causes of death. There were more than twice as many suicides that year as there were homicides. The more that we empower the people in our community to get trained in YMHFA and learn how to speak to someone struggling with suicidal thoughts, the more likely the number of suicides will start to decrease.
Like many these past weeks, I’ve been following the tragic story of the woman with significant intellectual disabilities receiving services at Hacienda HealthCare in Phoenix, Ariz. According to news reports, she gave birth to a child after being sexually assaulted, allegedly by a 36-year old licensed practical nurse. The reports also have tracked the resignation and suspension of two doctors at the facility, and the removal of the now former CEO, who reportedly had sexual harassment allegations leveled against him by various staff members beginning in 2006. Like most people, the story disgusts me, but unlike many, it didn’t shock me.
Disabled people are seven times more likely to be victims of sexual assault than their nondisabled counterparts, according to Department of Justice crime statistics. These crimes are most often committed by people individuals with disabilities know, during the daytime, and in places where the victims, their loved ones or others assume they’d be safe, as reported in an NPR report by Joe Shapiro.
You probably didn’t see them. Too few people did. News stories about thousands of people with disabilities facing life-or-death situations.
One reported that more than 10,000 people died waiting to hear the result of their Social Security Disability Insurance appeal in 2017. The other revealed that Delawareans with disabilities who rely on Supplemental Security Income can’t afford the rent on an average one-bedroom apartment.
Unfortunately, the stories appeared during the holiday rush. Bad timing. But you also likely didn’t see them because too few press outlets chose to give the topics the time of day. Then as now, the press was more interested in devoting space daily to Democrats taking control of the House, the government shutdown and the volatile stock market – important stories, surely, stories the media considers mainstream. Yet they also gave space, and plenty of it, to stories involving Meghan Markle and Lady Gaga, the weather, and, dare I say it and lose local readers of this post, the Eagles’ chances of making the playoffs.
With the midterm elections behind us, disability advocates face an opportunity to make significant legislative gains.
The conventional wisdom holds that gridlock will dominate the 116th U.S. Congress, which begins in January 2019. With a GOP majority in the Senate and a Democrat-controlled House of Representatives, both parties are poised to block each other’s most polarizing bills. But because there will likely be little movement on contentious agenda items, space will open up for other issues to come to the fore. The disability community is uniquely poised to take advantage.
Many disability-related policies were not only front and center in the midterm elections – several unified Democratic and Republican voters.
Last month, federal immigration agents separated a 10-year-old girl with Down syndrome from her mother at the border. Nine months before that, agents did the same to a 16-year-old boy with autism, taking him from his caregiver grandmother.
Unimaginably unconscionable, their separations and those of some 2,300 other children at the border from their parents and other caregivers came in the wake of president Trump’s zero tolerance policy against immigrants allegedly entering the country illegally. Though the president eventually signed an executive order June 20 calling for children to instead be detained with their families through the duration of immigration proceedings, the damage is done.
When the price tag was under $1 million, the 2017–2018 Delaware General Assembly overwhelmingly approved bills that should benefit the disability community.
Delawareans with disabilities no longer will face discrimination in organ transplant determinations. School resource officers will be trained to use de-escalation, not restraint and seclusion, as a disciplinary technique. State health services won’t be able to “claw back” funds from ABLE accounts upon the beneficiary’s death.
The Legislature also started a program to forgive as much as $10,000 in student loans for educators in short-staffed fields, including special education. And with a growing population of students diagnosed with autism, lawmakers created positions for autism specialists who will offer training and assistance in schools across Delaware. The new Delaware Advance Scholarship Program will reduce tuition costs for students with intellectual disabilities attending college.
When a bill’s price tag topped $1 million, though, state lawmakers stepped forward, rocked backward, or stood still.
I can’t shake the memory of Artfest. Don’t want to, really. The creative workshop and community celebration that the Center for Disabilities Studies and Art Therapy Express hosted a couple Saturdays ago lasted just two hours, but the wall-to-wall smiles, the camaraderie, the incredible artwork left an indelible mark.
Opportunities for Artfest participants – individuals of all ages, backgrounds and types of disabilities – to express their artistic sides appeared endless, thanks in no small part to the encouragement they
It’s 2018. I have to remind myself each time someone I know uses the R word. They – no – society should know better than to use such degrading, insensitive language. My jaw shouldn’t have to drop because my professor used the R word in class, even if he did apologize and admit he was adjusting to the “new” term, intellectual disability. I shouldn’t be disappointed when a classmate uses the word to describe the “stupidity” of her significant other.
People with disabilities are often treated unfairly in the workplace. To make matters worse, people with disabilities who come from a minority racial background are at even more of a disadvantage. As a black man with autism, I fit into that category. I believe a person, regardless of disability or the color of his skin, should be evaluated on the content of his character and on the quality of his work as an employee. However, the stigma still exists that
Let’s begin with SWEET:
“Have a good day, sir!” Ian Snitch said enthusiastically to a guest exiting the Courtyard by Marriot – a courteous and attentive act that Ian executed even before his supervisor, a front-desk specialist, had gotten the chance.
It would be just one of many things Ian said and did on Disability Mentoring Day (DMD) that impressed and amazed me. A first-year student in the University of Delaware’s Career and Life Studies Certificate (CLSC) program, Ian, along
Categories: Center for Disability Studies, community living, developmental disabilities, diversity, Education, employment, inclusion, independent living, intellectual Disabilities, people with disabilities, Uncategorized, University of Delaware
Walking through UD’s Trabant student center early this month, I saw a few student protestors standing next to an information table staffed by a campus chapter of Autism Speaks. The protestors’ signs read, “Autism Speaks doesn’t speak for me” and “Before you donate consider the facts.” I got excited at the sight of a little political activism in relation to disability issues on our campus, and eagerly wanted to join in.
With the protestors.
Many people wanting to help
What does it mean to be an ally? That’s something I asked my fellow University of Delaware colleagues multiple times over spring break and something nearly 600 UD students all over the country have been thinking about. They and I are a part of an organization called University of Delaware alternative Breaks (UDaB).
UDaB is a student-run organization at UD that coordinates service-based learning experiences across the country that focus on social issues. Our 20 trips this spring break emphasized
More than a month after Donald Trump defeated Hillary Clinton, the disability community shows little sign of letting go of its grief and fear and no wonder.
In Clinton, the community heard a candidate who took turns applauding people with disabilities (they’ve “changed things for the better in our country”) and advocating for them (they’re “too often invisible, overlooked and undervalued”).
She promoted a plan designed to push states to require health coverage for autism services in private insurance plans,
Categories: autism, civil rights, community living, developmental disabilities, diversity, employment, inclusion, people with disabilities, physical disabilities, politics, public policy, subminimum wage, transportation, Uncategorized
Tags: American Association of People With Disabilities, Barack Obama, Bill Clinton, disability community, Donald Trump, Hillary Clinton, IDEA funding, Individuals with Disabilities Education Act, National Council on Independent Living, New York Times, Rehabilitation Act, Serge Kovaleski.