Sunday, April 07, 2013

Seeing the Person before the Disability

In the disability world you may have noticed a big campaign going on for the past couple of years.  (At least that's how long I've been aware of it.)   The campaign is called "People First."  It's to remind you that people with disabilities are just people.

Do you wear contacts or glasses?  Did you know that you have a disability?  You do.  It's just that wearing glasses is so common it's become normal.  Nobody considers someone whose eyesight is failing to be disabled.  It's a disability that even has a cure, now - lasik.

The problem is that the general public is a lot less comfortable with the less common disabilities.  Wearing glasses makes you look smarter.  Glasses add to your attractiveness and desirability, at least that's what producers of eyewear would have you believe.  Sitting in a wheelchair doesn't work that way, does it?

If you have kids with disabilities, you have a front row seat to their lives.  You probably don't have any problem knowing the person before the disability.  If you don't have kids with any kind of disabilities, however, it's harder.  It takes an enormously open mind to see the person, rather than the person-in-a-wheelchair or the person-who-can't-talk-normally or the person-missing-a-limb.  Without experience with these people - without having opportunities to get to know the people who live with disabilities - it's next to impossible to have that enormously open mind.

It's easier if you knew the person before he or she had a disability.  If it's something they weren't born with.

Remember Jack Jablonski?  I wrote about him before, here.  He's the local teen who was paralyzed during a high school hockey game.  He has received so much love and support.  It's easy to see Jack, and not the disability because he was a nondisabled person, first.

I met a girl named Marrie last year.  Her name is pronounced Mary.  Here's a short video of Marrie testifying at the Minnesota State Capitol.

She has a twin sister named Carrie, and Marrie was born with cerebral palsy.  I got to know her last year at Partners in Policymaking, and I got to see the person behind the body that doesn't work quite right.  I've never experienced Marrie-without-the-disability, but I can see past it now, because I got to know her.

I know, I've harped on this subject before.  The recent death of Roger Ebert got me thinking about it again, though.  Roger Ebert was disabled.  Most of us don't think of him that way, because we knew him before he had a disability.  He was a person-without-a-disability first. 




Cancer took away a lot of his face and his ability to talk, but thanks to modern technology, he still had the ability to communicate.

In this video, Roger explains with heartbreaking personalization why society is so uncomfortable with living, working, and playing alongside people with disabilities:

"It is human nature to look at someone like me and assume I have lost some of my marbles.  People talk loudly and slowly to me.  Sometimes they assume I am deaf.  There are people who don't want to make eye contact.

It is human nature to look away from illness.  We don't enjoy a reminder of our own fragile mortality."

"We are all just one banana peel away from joining the disability movement."
(I heard this for the first time at Partners in Policymaking, but if you Google this phrase, you'll find it attributed to several different people.)
 
When you hear about battles for legislation to help people with disabilities, think about Roger Ebert. Think about Marrie and Jack.  And watch your step, literally and metaphorically.

No comments:

Related Posts with Thumbnails

Labels

#youmightbeanautismparentif 2012 in review 9/11 memories ABA therapy Acceptance acronyms advocacy affection aggression AJ Aliza Aliza the playwright All I really need to know... Alphabitty Moments American Girl Ann Coulter antibullying anxiety anxiety in parents of children with special needs apple orchard apps for autism AppSmitten Arbaclofen Arbitrary Thoughts ARC autism autism brushing autism portrayed in TV shows Autism Shines awareness backyard band baseball bath toys beds behavior problems being tall Birthday Boys biting blog change blog hop blogging books bottles brushing bubbles Burnsville Fire Muster bus Cabin Fever in Minnesota candy Carly Fleischmann Carly's Voice cats cats and dogs chewys Chicago childcare for special needs children childhood Children's Museum chocolate Christmas Church circumin clinical trials Clonidine CNN Hero of 2011 coffee communication comparisons computer Conference cost of special education Courage Center Curcumin daddy dance dance competition dance moms Dental surgery dentist developmental milestones diagnosis diapers Diego Disability Day dogs Dolphin Tale Doomsday Preparation Dora Doritos drug trials DVD player early intervention earrings Easter ECSE Parent Retreat electronic gadgets electronics Everything I need to know... Evil Overlord fall falling asleep at school families family fashion fear Featured Feel Good Friday field trip fireworks first day of school Flash Gordon Food Chronicles food issues in Fragile X and autistic children forms forts Fragile Face of God Fragile X Fragile X advocate Fragile X and autism Fragile X Awareness Day Fragile X carriers Fragile X in the news Fragile X presentation Fragile X statistics Fragile X Writers friends fundraiser for Fragile X funniest Funny Gabrielle Giffords Galveston games getting carsick Girls' Night Out Giving Spirit glasses global warming going home Good Morning Great Quotes guest blogs guest post haircuts Halloween hearing test Heaven is for Real hippotherapy holidays Holland Holly home life homework hotel hugging human behavior hyperactivity IEP Meeting IEPs in the news inclusion inspiration integration iPad iPad apps iPad apps for autism IQ testing Jack Jablonski January First Joke journal entry kids with Fragile X and animals Kindergarten Kindle kisses language study learning to talk leaves lemonade stand Lily Little Einsteins losing teeth Mad Gab makeup mall Mall of America marcia braden McDonalds media sensationalization medications Melatonin Miami MIND Institute Minnesota Bloggers Conference minocycline Miracle League monkeys mosquito bites Mother's Day movies MVMOM Used Clothing and Equipment Sale nail trimming names naughtiness neighbors nicknames nightmares normal off topic one thing leads to another online dating Operation Beautiful oral sensory orphan drug act other bloggers Our Wedding outside overstimulation panic attacks parade parental stress Parenthood park Partners in Policymaking penicillin people with disabilities pets pharmacy fun photography Photoshop picnic Pictures pinching pink shirt Pinterest playing outside playing with toys poem politics poop potty training Presents protecting autistic children rash reading to kids research Retreat riding a bike Robin Williams Roger Ebert routine RSS feed RUSH University San Diego Sandy Hook Elementary Santa schedules school school bus school notes school pictures screaming self image self-checkouts sensory Seroquel siblings with developmental delays sick kids sippy cups sleep smile snow pictures Snowstorm social situations speaking of the unspeakable special education special education evaluation special needs kids special needs parents Special Needs Ryan Gosling Special Olympics spelling spoon feeding spring break staying positive stimming Strep STX209 Stylish Blog Award suicide summer Sunday School Sundays sunshine survival mode swimming talking talking to kindergarteners Target teacher's aides Teeth brushing Tegretol Temple Grandin Ten Commandments textbook case of Fragile X thankful thanksgiving that window/mirror thing The Autism Store The R Word the rapid passage of time The Right Things to say to parents of special needs children The Santa Experience the Shedd Aquarium The Twin Thing The Wiggles therapeutic horseback riding therapy This is Autism topless trampoline traveling with special needs children TV twins with special needs Twitter typical Fragile X characteristics typical kids typing vacation Vacation Bible School video games videos volunteering Waisman Center water play way-back-Wednesday What I've Learned What's your song? when a special needs parent dies Wiggles Wii games Winner Winner Chicken Dinner winter wonder Wonder Pets Wordful Wednesday Wordless Wednesday Words of Wisdom World Autism Awareness Day YMCA You Tube Zack Zoloft zoo animals

Fragile X Blogs