Rethink your outlook on the disabled

By Johanna Mattern Allen

Posted: Mar. 23, 2009

Words cannot begin to express how disappointing it was to hear President Barack Obama’s Special Olympics gaffe on “The Tonight Show with Jay Leno” on Thursday.

But it’s not just Obama who needs to take a hard look at this. His remark on one of the most popular television shows in America is indicative of a culture that is all too comfortable disparaging individuals with a disability – I might add, individuals who never would disparage him or anyone.

Since he so decidedly put his foot in his mouth, here’s my four-point plan for the president to make reparations for the cultural damage he caused last week:
* Pony up beaucoup bucks for the Special Olympics cause.

* Create a cabinet position for disability now. There currently isn’t even a policy adviser for disability since Kareem Dale moved to an arts leadership position. With a disability population in the United States of 50 million-plus, and growing especially as our population ages, we need disability experts to work alongside our president.

* Create positions for self-advocates in the White House so the president and the world never forget about people who have to work harder than he ever can dream of working to achieve what they do.

* Urge every college, university and high school in America to teach disability history/cultural competency.

Obama isn’t the only smart (read: well-rounded intellectual) person I know who knows jack about disability. And not all of us are as lucky as me to have my son, Jack (who has Down syndrome), for a teacher.

It’s totally cool to not know, but do something about it instead of getting defensive, making excuses or ignoring it. Here’s my simple, pain-free, four-point plan for the rest of us:

* Read some disability history. Read Paul K. Longmore.

* When interacting with an individual with a disability, presume competence. Always. Just because someone moves, communicates, sits, eats, breathes, walks, hears, sees, thinks or problem-solves differently, or doesn’t do any of these things, he or she still experiences life, contributes to the world, has feelings and thrives and depends on relationships with others.

* Don’t defend offensive language. Just because it comfortably rolls off one’s tongue in mixed company or it’s self-deprecating or we’ve always said it, that doesn’t mean it’s right. The next time you think “we’re being too sensitive,” think about how you sound clinging to an outdated term and defending it after the minority group being maligned has asked you to stop. If you need to be self-deprecating, use a thesaurus. Find the word or phrase you like and practice it before you need it – that’s how habits get broken. Language influences culture, culture influences policy and, in my son’s case, he can hear you (and so can I).

* Give us a break. No really. Take the time to be with a parent of a child with a disability or an individual with a disability. Encourage your children to have a play date with a child with a disability. Challenge the idea of why you might not have a friend with a disability. Reach out in friendship to those of us who are most marginalized. The great secret about disability is that each one of us is only a heartbeat away from it at all times.

The great tragedy of past generations is that there have been unspoken divides between the cultures of the disabled and those who are not. In the culture of disability, we’re accustomed to cheering on individuals with great challenges to help them overcome great obstacles and odds.

We in the disability community know those of you who aren’t disabled are able to learn more and know you are capable of using inclusive language and joining us in a 21st-century way of thinking.

Johanna Mattern Allen lives in Milwaukee. March 31 is the Special Olympics’ “Spread the Word to End the Word Day,” a national day of awareness calling for America to stop and reconsider the use of the “r” word: retard/ed. Go to www.r-word.org

It’s especially important on the days where you’ve…:

• got 43 things that still need to be done before dinner
• Had it out with the IEP team
• Fought with the insurance company about _______(fill in the blank)
• Given up on the behavior intervention plan because it’s not intervening
• Driven 150 miles to doctors and had nothing but caffeine to keep you going
• Not slept in 36 hours because your watching to make sure there are no more seizures
• Had a fight with your spouse about _____(fill in the blank) which has just made you snippy

…And you might otherwise forget.

You can find the full text at her site by clicking here. Here are my 10 favorites! I hope you’ll find them worthwhile enough to pay her site a visit.

1. Spend a little time each day playing entirely at your child’s direction.
2. Cuddle up under a blanket and watch what she wants to watch on TV.
3. Exchange nose-to-nose Eskimo kisses.
4. Send an encouraging note with your child’s lunch.
5. Take a long walk together, at your child’s pace.
6. Read the funny pages together.
7. Use magnetic letters to put loving messages on the fridge.
8. Send your child a card in the mail, with stickers or a treat inside.
9. Stick an encouraging note on your child’s mirror as she sleeps.
10. Develop a secret gesture only the two of you know the meaning of.