Disability Futures

“The biggest reason why most people look differently at people with Down Syndrome is that we don’t see them as individuals, but as patients. Not knowing how to approach or befriend them, some might simply discriminate them to escape from the difficulties. However, they are a chosen group of people. Genetic changes turn each of them into someone with innocent appearance, kind heart and free spirit. They are also emotionally expressive: when they feel happy, they will laugh out loud; when they feel sad, they will shed their tears,” says Freeman.

These situations can be avoided easily if meeting and conference organizers are committed to planning accessible events. In fact, everyone can claim that commitment by planning a New Year’s Revolution to fight for more accessible meetings. Here’s how:

• Sending out evites is great if they are accessible to people who rely on screen readers. Make sure they, like all invitations, include a place for people to request accommodations for disabilities.
• In all documents use a strong sans serif font such as Arial. Stay away from bold, colors, underlines and italics. Stick with good contrast such as black print on a white background. Whenever possible make your default font size 14 pts. If you can’t, make large print documents available.
• Provide organizers’ contact information via phone, email, website, etc. Different people use different contact methods better than others.
• Whenever possible provide real time captioning at all events. This makes comprehension possible and easier not just for people who are deaf or hard of hearing, but also people with learning disabilities, ADHD, brain injuries and cognitive disabilities from other causes. It also helps people whose first language is not English.
• Choose the venue very carefully. Never take the word of venue management that it is accessible as some people define the term way too loosely. Before making a final decision visit the venue and take a good look. If the venue is in another city, find a disability organization and ask them if someone might look at the venue and let you know what they think. Here’s what to look for:
  • Is it on a public transit line? Many people, especially people with disabilities, rely on public transit to get around town.
  • Is there a clear, safe path from the bus stop to the front door?
  • Is the front door easy to open? Better yet, does it open automatically?
  • Is there a covered drop-off entry?
  • Are there enough bathrooms to handle the number of participants you expect?...

I’ve heard people say a million times that study after study shows that cripples make good employees because we’re very loyal and thus we don’t call in sick or take vacation days or complain or try to unionize or move on to other jobs like uncrippled workers do.

People ought not to be spreading that kind of stuff around about us, especially if it’s true. It makes us sound so desperate and clingy. It’s such a turn off. It’s like the cripple is saying, “Please hire me because I have such a hard time getting jobs that I’ll gladly take any damn job I can get and I’ll never ever let it go no matter what!”

It bears explicit saying that every time the disabled body is used as a source of metaphor for being less, being broken, or being wrong, that metaphor violates these three principles. In that moment, the negative metaphor eliminates curiosity about the experience of others. After all, everyone can run, right? Or run in their minds? What does that even mean? (protip: No. I don’t run in my mind. Running doesn’t communicate an experience or emotion to me because I don’t do it. In those moments, I end up waiting for the conversation to include me again.) The negative metaphor confuses the boundary between the disabled person and the one observing them, allowing the observer to overlay their own meaning on the disabled body and describe the quality of the disabled experience. My experience is that walking is hard. Part of using metaphors skillfully is being accountable that having the experience that walking is hard is distinct from running a difficult race. Mashing everything together isn’t the best approach. It is a way to obliterate or assimilate the stories of those voices at the margins.

Summary:  Disability rights advocates are preparing to work in broad coalition with medical and other groups that oppose legalization of assisted suicide, as proponents announce plans to introduce bills in several states in the wake of Brittany Maynard’s tragic death.  Representatives of Not Dead Yet, the Disability Rights Education & Defense Fund and Second Thoughts are available for interviews.

Brittany Maynard’s personal story has ignited the debate around assisted suicide legalization.  Most recently, Maynard’s husband appeared in an interview alongside the president of Compassion & Choices, formerly the Hemlock Society, to push legalization.

Disability advocates are deeply sympathetic to all people with a terminal illness, facing the difficulties that lie ahead.  Legalization of assisted suicide can look acceptable and safe when the focus is solely on one individual. However, a closer examination of the issue reveals the immense harm legalization poses to vulnerable people, the elderly and society as a whole.

“If these bills pass, some people’s lives will be ended without their consent, through mistakes and abuse,” said Marilyn Golden, senior policy analyst with the Disability Rights Education & Defense Fund. “No safeguards have ever been enacted or proposed that can prevent this outcome, which can never be undone.”

Sara Wolff fought hard to help others like her, so U.S. Sen. Bob Casey, D-Pa., offered her a special thanks.

He invited Wolff to sit in the U.S. House gallery next Tuesday to watch President Barack Obama deliver the State of the Union speech. Wolff helped Casey get a bill passed that helps those with disabilities.

“I was very surprised and excited at the same time,” Wolff, 31, of Moscow, Pa. said Monday. “This is my first time. I’m very excited. A little bit nervous, but very excited.”

The Achieving a Better Life Experience Act, ABLE Act for short, allows people with disabilities to save money in untaxed accounts similar to tax-advantaged accounts used by families who save for college. The act also allows Americans with disabilities to save money for education, housing, transportation and health care without losing eligibility for government programs.

The bill passed the House on Dec. 3 by a vote of 404-17. In the Senate, the provision was part of a larger tax bill that passed 76 to 16.

Obama signed the bill into law Dec. 19.

“I call it history in the making,” Wolff, who has Down syndrome, said. “It’s very important for people with disabilities, Down syndrome, autism, etc. Now, they can save money for their future.”

Casey said he wanted to honor Wolff because of her advocacy.

Over the past few days we’ve noticed an interesting hashtag trending in our Twitter feed, accompanied by some very insightful and powerful messages. #StopAbleism2015 is generating a lot of social media buzz and forced us to take a minute to review some of the words and phrases we take for granted, without thinking about how damaging they may be.