To explain or not to explain: That is the question

When talking to the public don't explain your disability at great length and then turn around and ask them to treat you like everybody else.
It's a very contradicting message and I would love to see people with disabilities (and parents) stop using this way of introducing themselves.

Your disability is a part of you, but it does not define you. It's not the most important thing about you.

If you start a conversation off with your medical diagnosis and rattle off how or why a disability effects you, I feel strangers will just compile the information into a large pile of CAN'T. You are building your own mountain that you will have to scale. People with disabilities have enough barriers, why create them with words?

A person is much more than their disability. Choosing how you communicate with the public that will convey that. Stop explaining yourself away. Stop self-identifying as a label. 

When meeting a person for the first time, find common ground with them. Friends heighten quality of life. Friendship can form under any shared interest. If the first thing out of your mouth is 'disability', however honest and clear you describe it it will create divide between you and the potential new friend.

Do you hear people say, "Hello. My name is Bob. I have high blood pressure."? No, you don't. Leave the medical labels in the doctors office. Even then doctors can be wrong, or medical diagnoses are always changing, or medical discoveries are made, so why bother trying to stuff yourself into a pre-labeled box?

I used to tell anybody and everybody about disability, in hopes of if people understood then then they would accept. Explaining yourself into oblivion does no good. It takes and leaves you with nothing. It dehumanizes you. There is a time and place to explain your disability.

I do believe in teaching awareness in a careful all encompassing way. 
This disability month, that disability month…. It's starting to really get on my nerves. How much awareness does a person need to be beat over the head with? I'm sure by now, the bombardment of awareness has turned into a dull mind-numbing roar that the public has tuned out. 
Instead of a particular disability awareness plug/PSA, advocate how people with disabilities should be treated. BUT then when doing that, you'll see the disabled community run into this paradox:

"Just like you." 
OR 
"Different. It's ok to be different." 
If it's confusing to me, our children must be baffled!

I'm sure we all want to be accepted. We want a space at the family table, so to speak. In that aspect everybody on earth is the same. The truth is we  each have our differences and as humans we are intelligent enough to include everybody.

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"As we think so shall we speak, as we speak, so shall it be.”

People First Language is a way of speaking about people with disabilities in a positive manor that does not put disability in the spotlight. Too often the disability takes over conversations when the true focus should be on the person's likes, needs, wants and life goals. The way we choose to speak is so important, because it forms the world around us.
People First Language also changes how we describe assistive devices.
For example: She's in a wheelchair Changes to: She uses a wheelchair.
People First Language may seem like a small thing, but if more people used it attitudes towards disabilities will change for the better. So be sure to try and use it and maybe just by listening, somebody near you will start using it too.

Here's a fabulous webpage that gives more detail about People First Language:
http://www.gcdd.org/news-a-media/people-first-language.html


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When reaching out for support or advocating for your child, at what point can it be damaging to social perception of disability?

A Facebook chat about two articles:
Paying For My Special-Needs Child
&
Why We Published A Photo Of A 16-Year-Old In A Diaper

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“I stopped explaining myself when I realized people only understand from their level of perception.” 

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Stop blaming the disability. Take it off your list as the #1 go to reason when there is a problem.
Facebook chat
 


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A few of my favorite parts of Kathie Snow's book Disability is Natural

I met Kathie Snow at my last Partners in Policymaking class.
When I asked her to sign my copy of her book this is what I said to her:

"Your book was validating and infuriating at the same time."
She knew exactly what I meant.
"You had to live through that didn't you?"
"Yes, and I like to read books to escape what you wrote about, not the opposite!"
We both smiled.

Her book is basically what (by my mid 20's) I got tired of trying to tell/show/prove to people.
It's not me, it's you with the problem!
you=society
I'd recommend this book to anybody. I mean everybody. I also suggest you ask your public library to order a copy, so even more people can read it.
I'd like to share a few of my favorite passages. Actually there's many parts I love, but i'll just share a some.

Snow, Kathie. Disability Is Natural: Revolutionary Common Sense for Raising Successful Children With Disabilities. Woodland Park, CO:BraveHeart Press, 2005

http://www.amazon.com/Disability-Natural-Revolutionary-Successful-Disabilities/dp/0970763662

http://www.disabilityisnatural.com/



“There have always been people with disabilities in the world and there will always be. One of every five Americans is a person with a disability. People with disabilities make up the largest minority group in the United States, and it’s the only group that anyone can join at anytime—like in the split of the second of birth, in an accident or through an illness. It’s the most inclusive minority group; disability does not discriminate! People of both genders, and from any age group, ethnic background, socioeconomic level, religious faith, and sexual orientation may experience disability. And the incidence of disability is on the increase, because of advances of medical technology. Not too many years ago, premature babies often died shortly after birth. Today, they survive, but may have disabilities. Once upon a time, many children and adults died from accidental injuries or serious illness; today they live, but with a disability. And many of us will live to a ripe old age but with some type of disability. Contrary to Conventional Wisdom, it’s as natural or normal to have a disability as it is to not have one.”


“I found that there were only two categories of people that no one was willing to trade places with for a day: inmates and people with disabilities.

A brief discussion with participants reveals why they feel this way: it's not know you've committed a crime or the presence of a disability (having to use a wheelchair, for example) that makes people reluctant to trade places with those two groups of people. The overriding factor is the environment. Where and how these groups of people spend their time! So I wrap up that part of my presentation by asking conference participants to do whatever it takes – to create change – so they would be willing to trade places with an adult or a child with a disability for one day.”


“More progress has been made in disability issues in the Untied States in the last fifty years than in hundreds of previous years. We have more laws, programs, entitlements, and services than ever before. Yet individuals with disabilities are still excluded, segregated, marginalized, and devalued. How can this be? Because we can't legislate attitudes or ethical behavior.

There is no doubt that – as Ed Roberts believed – old attitudes and paternalistic authority constitute the greatest barriers facing people with disabilities, including your child and mine. Until attitudes and perceptions change, little progress will be made toward the inclusion of people with disabilities in all areas of society.”


Kathie Snow quotes Joyce Rebeta-Burditt:
“Do you know what it's like to feel wrong 24-hours a day? Do you know what it's like to be disapproved of, not only for what you do and say and think, but for who you are?


I'll paraphrase the rest:
Get your child the Assistive Technology he or she needs now.
If you think your child practices enough with a walker one day they'll walk, you're wrong. If they are struggling YOU need to get over it. Your kid needs a power chair.
If you child can't talk getting a communication device will not prolong them from talking. Every human being needs to communicate.
While i understand why parents hope for a healthy baby, the way it's expressed could be sending the wrong message from the start without even realizing it. "Oh, I just want my baby to be healthy!" Of course you do, but will you love your baby any less if it has a disability? (I hope the answer is No) I'm sure I was considered a sick baby, but I turned out wonderfully. Didn't I?
The chapter on education is my favorite in the book! To sum it up, if the disability employment rate hasn't improved after all these years then the way we are educating children with disabilities is wrong. Inclusion in schools, leads to inclusion throughout life!

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