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

Enjoy!!

Every Sunday I hope to offer you my version of the Sunday paper with articles from the past week or two, relevant or uplifitng (or both), on various issues within the special needs community.

Trip planned to protest cuts to special needs program
An Alabama woman is planning a trip to the state capital on Wednesday to protest proposed cuts to the state’s Early Intervention Program.

Special needs music box artists share their gifts
Art Access is a place for people with differing abilities to come together and grow creatively by learning about art and each other.

Disability no barrier for Gaither Athlete
High School sophomore Casey Garber says he’s not trying to prove anything by competing in track and field just because he has cerebral palsy.

Program targets kids with special needs
Pennsylvania Parks and Recreation program has started two programs for children with special needs and their parents

Bid to turn Castlehyde Hotel into care centre for special needs kids
Bid to take a hotel closed in 2005 and turn it into a day care center for children with special needs.

Advocate brings disability awareness to students
Kokomo students learn about difficulties people with disabilities face in everyday life in an event that Russ Ragland has brought to the High School for the past eight years.

Prime Time Disability
While its becoming more common to see people with disabilities on primetime television, unfortunately it hasn’t broken it’s habit of using able-bodied actors to fill the roles.

Every Sunday I hope to offer you my version of the Sunday paper with articles from the past week or two, relevant or uplifitng (or both), on various issues within the special needs community.

School’s Basketball team adds special needs children
Middle School Basketball team in California shows what the true meaning of sportsmanship is with inclusive basketball team

No Dental Care for Special Needs Patients
Adult special needs patients in Cork, Ireland are going without even basic dental care because of the lack of anesthesia services

Profile: Melissa Piotrowski teaches music to special needs students
22 year old Melissa Piotrowski takes a love of music and shares it with special needs children

11th Berkshire Disability Day planned
Event is a day of celebration and education to increase community awareness of the accomplishments of those with diverse abilities. Showcase of available services also planned.

Book transports child with special needs
Photography teacher Joe Baltz has his students create a 16 page book starring a child with special needs.

Alzheimer’s, Down’s link sheds light
Researchers at the Byrd Alzheimer’s Center and Research Institute say they have recently learned some important new things about the link between Alzheimer’s disease and Down’s Syndrome

My baby, right or wrong
Woman chooses not to test unborn child for Down’s Syndrome and the reasoning behind her choice

Last week I wrote about how I thought that peer mentoring programs could benefit children by diminishing the possibility of bullying or harassment by other peers. This article in the Daily Press, a Virginia paper, highlights a program in York County utilizing this very concept. The brilliant thing about it is that it starts at the best possible time – pre-school.

It’s interesting however to note that the thought process that seems to have been used in putting this program into place is that this program gives the special needs child the ability to mimic their “typical” peer and therefore gain valuable skill development – both social and developmental. Certainly this was always a legitimate learning tool for Katherine.

As a young child in daycare, Katherine was placed in with children who were chronologically in the same age range as she was and we saw two things happen. One was that Katherine mimicked her peers in the classroom. The second is that because Katherine wanted to do what others in her classroom were doing she worked to figure out how to accomplish the task that much harder. She might not have done it exactly like her peers but she sure did find her own personal workaround.

The perfect example is crawling. Katherine would see her peers crawling around the room but because of physical weakness in her shoulder she couldn’t do exactly what she saw others doing. Her drive to be as mobile as her peers however had her work that much harder to find a work around. We called it butt scooting. It was this push up with one arm and her legs that she used to propel her butt forward and move. Brilliant. Would she have figured out mobility without the peer interaction? Possibly, probably. Was it a help?  In my untrained opinion – it was an essential piece of the learning process.

Of course exposing typical children to our special kids is just as beneficial to them as it is to our children. As pointed out in the article – “You learn something better if you teach it yourself”. These children are in essence – mini teachers. They help teach and they benefit because the lesson is that much better learned having not only learned it but interpreted that learning into teaching the same concept.

Better yet, when it’s possible for children to be in this setting the mini teachers are also learning – learning at a subliminal level in many ways. By this daily exposure to children with a variety of disabilities, typical children learn about people being different and yet, not all that different. What the children in Katherine’s daycare learned was that while Katherine might learn differently and might approach things differently than they did physically, she liked pizza at lunch as much as they did and looked forward to seeing the Barney video at rest time just like they did.

This is the beginning of understanding and breaking down prejudice that comes from fear which always springs from ignorance. Seems only right that ignorance be eradicated by education and that education starts with our young in school. Win-Win situations are always best and this seems to fit that definition to a T.

Every Sunday I hope to offer you my version of the Sunday paper with articles from the past week or two, relevant or uplifitng (or both), on various issues within the special needs community.
The case for increasing the number of Medicaid waivers
Opinion piece eloquently explaining the need for increasing available medicaid waivers in Virginia which should be reprinted in every state in the union.

Art as an outlet; ‘Living Creatively’ exhibit recognizes ability, not disability
44 artists featured in the 3rd annual ‘Living Creatively’ exhibit all live with disabilites but it it is their artistic ability that unites them.

Hip Hop Baby
Candi Carter develops family friendly ‘hip-hop’ music to teach preschool concepts to help son who was born with chromosome disorder and finds it helps others with special needs as well.

Exercise Group to special needs young people in Hemet
Exceptionally Excited Kids is a nonprofit organization serving individuals with special needs from age 2 through 25.
Rylee’s Rally to help children with special needs
Deborah Davis organizes Resource fair for parents of special needs children with more than 30 vendors who supply a variety of products and services.

Local basketball team headed to Special Olympics championship game
Inspiring story about Naples, FL  basketball team undefeated and heading to Orlando for the state championship

14 percent of U.S. Kids with special needs
Twenty-four percent of families with a special needs child report a parent had to stop working or reduce hours to care for the child. Numerous other findings in a survey by the Health Resources and Services Administration

This is the title of an article that ran the other day on the Science Daily website. This study was one that was that made me go DUH because this brilliant study reveals children with special health care needs, such as autism, ADHD and asthma don’t consistently get the care that is federally recommended. Furthermore there are serious state-to-state differences. See what I mean? We needed a study for this – why didn’t they just ASK us?! Well actually they did…..over 40,000 families were interviewed for this study.

According to this study more than 10 million American children have a special care need – that’s just about 1 in 5 households with children younger than 18. Just as important is that while states have some areas in which they perform well but no state provides all the recommended care to the majority of the special needs children.

Much of what was documented by this study is just plain scary to me. Not that I didn’t know it but seeing it in print makes it that much more scary – something like a Steven King novel. Hopefully having this study to back up what we parents have known for some time helps bring the drastic change that is needed at the state level. I encourage you to go check out both the article at Science Daily as well as the information in the study as it relates to your state by clicking here.  There is incredibly useful information if only someone who could utilize it to make our children’s lives better would read it (not that I’m speaking to any particular politician – although I can think of several who need a sound thrashing with a print version of the entire report)

Every Sunday I hope to offer you my version of the Sunday paper with articles from the past week or two, relevant or uplifitng (or both), on various issues within the special needs community.

Special Siblings
Photographer pays tribute to special needs sibling with one man exhibit.

Special Needs Dentistry
Clinic dedicated to doing dental care for those with physical and mental disabilities.

Park official to receive award for special needs work
Belief that sports and outdoor activities give those with special needs a new outlook on life drives recreation director to running therapeutic local programs.

Truly special aide is recognized
Elaine Crowley is recognized by the Federation for Children with Special Needs Community Partnership Award for her work as a paraprofessional in Massachusetts schools.

Notre Dame football coach’s wife writes on daughter’s health ordeal
Maura Weis writes on her experiences with daughter Hannah and her complex fight against Tassinaris syndrome

Special needs kids are gym dandy at Us Too
California mom solves need for gym class for a child with autism by starting one for her son and others like him.

The Truth About Autism: Scientists Reconsider What They Think They Know
Amanda Baggs a woman who is non-verbal and diagnosed with autism makes You Tube Videos which make both scientists and laymen rethink what they “think” they know about autism and its related disorders.

Despite disability, JHS senior will walk for autistic children
Florida High School senior Gregory Nemiroff  has Dandy Walker syndrome affecting motor skills and speech in various ways but is committed to walking in the local “Autism Speaks” Walk Now for Autism event.

The last great struggle – A pioneer views disability as the final frontier in civil rights
Keith P. Jones who was born with cerebral palsy and uses a wheelchair, is a disability rights consultant and advocate as well as composer, producer and hip-hop performer.

I found this article while getting ready to do the Sunday paper for tomorrow and said wow I wonder when there is a nationwide Disability Awareness month….maybe this is for everyone! Uh, then again…maybe not. Only Indiana home of the Hoosiers gets to have this great month in March. Seems that the rest of us have to wait until October and technically that is ‘Disability Employment Awareness Month’ – oh well maybe I’ll just hope that Indiana’s Governor Mitch Daniels doesn’t mind if I celebrate along with him.

This year the Indianapolis Colts are sponsoring the campaign materials which will help communities plan various activities. Topics range from planning art contests to increasing ADA awareness within businesses. Hopefully these forums will echo the positive slogan of ‘Attitude is Everything’ for this years Disability Awareness Month. The message goes further to say

When you champion a winning attitude for yourself and your team, you can achieve anything.

What an amazing message to send to our young people able and disabled alike. What an amazing and important message for each of us to take to heart as well.

The Indiana Governor’s Council for People with Disabilities is the sponsor of this event and they state they are an independent state agency that facilitates change. I love the fact that in the state of Indiana individuals with disabilities are the largest minority block in the state – a whopping 17%!! Think about that number and what it might be in your state….at 17% that’s just shy of 1 in 6 individuals have a disability in the State of Indiana. Numbers like that should give the disability community some real power.

Nationally the number of individuals with disabilities in this country is even higher – Census Bureau Data on Disability, 2000 Brief on Disability Status says that 19.3% or almost 1 in 5 have some type of long lasting condition or disability. Keep in mind that those figures DO NOT include children under 5 or people in institutions – I would be willing to wager that this would put that number solidly over the 20% line.

To give you an idea of what I’m talking about a 2006 census gives us demographics by race which show just how strong that block could be.

• Hispanic/Latino (2006) 14.8%
• African Americans (2006) 13.4%
• Asian (2006) 4.4%
• Other race (2006) 6.3%
• Two or more races (2006) 2.0%

That number is so exciting because to me that represents power a significant voting block that can utilize that number to affect real positive change – just like that slogan – a winning attitude for yourself and your team and you can achieve anything.

We still have so very much to achieve so championing that cause must be something all 17% of the State of Indiana must do as well as the 19.3% of us nationwide. Advocacy is important for all individuals with disabilities as there is much to accomplish to gain further rights for our children. We have the power as a group to team up and accomplish that and more. Disability Awareness Month might just be the right time to go about it. After all I think we have the right attitude – and Attitude is Everything! GO TEAM!