Inclusion means everyone-or when special isn't special...an open letter to Special Olympics Maine

Cross posted from autismherd. Please share! 

contact info is Phil Geelhoed   PhilG@somaine.org
  To whom it may concern-or Hey Person who picked the venue for today's state swim meet!

 

I sat at the special Olympics today. It should have been wonderful.  It is not often that people with disabilities (either physical or developmental) are able to get together without judgement to participate in sporting events.

But it wasn't wonderful. I sat there and quietly seethed because I knew of at least one individual who worked equally as hard-but was unable to participate. This was not through any fault of their own-it was simply because the chosen venue had no hoist to help them into the pool. Imagine that-a "Special" Olympian excluded because of the very thing that made them "Special". Equally as unthinkable-a Special Olympics venue that was not fullyhandicap accessible! It boggles the mind.

Yes, there were people who were eager to help-"We'll hoist them in and out of the the pool ourselves-whatever it takes!" To add fuel to the fire-there were no accessible changing rooms for this person."Oh we'll let you use an open area and stand around them holding up towels." While I am sure that these were well intended suggestions, that there was no malice-I am equally sure there wasn't any real thought behind them either..This is a human being. Someone with thoughts, feelings, a personality. A person  deserving of dignity and respect. Someone who wanted their moment to shine-not for the spectacle of being hauled into a pool by strangers-or made to change behind a shield of towels-but because they were an athlete-a participant. Accepted and Included.

  Oh sure, I heard the excuses-when someone complained about this athlete being excluded, they were told- "You find a venue big enough to hold everybody!"  That doesn't  make sense. Really- what is more important?  A venue big enough to hold all the athletes or a venue that accommodates all the athletes? Had people known there was an accommodation issue(meaning  more than two days before the event) maybe they could have found a way to rent a hoist-or fund raised to buy one. Maybe a smaller more accessible venue (spread the event over two days) could have been used. Who knows what could have been done.  I do know however, what should have.

  I thought about this as I sat there today-watching all of the happy faces-seeing the pride in accomplishment, the joy in success. I sat and thought about the person who wasn't there-who didn't get their moment and wondered how left out they were feeling.  I looked around and saw all of the bright yellow Special Olympic tee-shirts - emblazoned with "Inclusion" "Friendship" "Unity" "Respect" -all such lovely sentiments. I tried to measure those sentiments against the person who wasn't included...and sadly realized that today- they were just words. .

  That athlete (and any others that may have missed out today) is owed a big apology. Accessibility, accommodation and inclusion-especially in the Special Olympics, should NEVER be an issue.Nor should they only be words on a tee shirt. This was unacceptable.

  As the mother of a "Special Olympian" and of other children with disabilities, I have heard far to many times about why my kids can not be included in some things. I can't tell you how much I loathe the sentiment "The needs of the many outweigh those of the few" I did not however expect that attitude to bleed in to the Special Olympics. I am appalled.

Sincerely,
Kathleen Leopold
Richmond, Maine
Kathomar@aol.com

15, autistic and wary of awareness...

 ~"These are the things that require neither signs nor       labels. Churches, coffins, and urinals all proclaim,

This is what I am.

No questions asked."

~ Andrew Smith~Grasshopper Jungle

(cross posted from www.autismherd.blogspot.com) 

  Autism awareness month is about to rear it's weird head..and I have been wondering (after five plus years of blogging)- what more I could say about it. By this point everyone is aware-so, now what? Really? What does awareness mean or do anyway?  This past week-I have learned what it means to my Sam.(I didn't even know that he was paying attention..*sigh*) He is fifteen, autistic..and one of the best people that I know.  He doesn't like the "lighting it up blue" or the puzzle piece symbolism.  In one conversation, he equated all of that with Nazi Germany-telling me that he felt as if he were being marked much like the yellow star or pink triangles from then. He makes a lot of sense-and, being autistic-he has even more of a say in what this month represents to him than most other people. The following (in red) are his words-his thoughts.  the drawing is his as well...So, without further ado-I'm going to kick off this whole awareness month with the thoughts of my son. These are his words.


This month always separates us into two groups-the "afraid" and the "feared".  The afraid, not knowing what autism is- create hate (or the opportunity to abuse) making the "feared"(autistic peoples) lives miserable. The people trying to "help" are filled with pride which makes them feel special.  They always talk about the problems, what "they" can not do and NOT what they CAN do.Making not only themselves blind..but even some autistic people as well- especially when they try and embrace this blindness. They blind potential.  Another part of this parade of abuse...this march of madness..makes siblings who don't have autism look like their lives are miserable. But, the saddest part of this is that a lot of people are too blind to see the truth.  Please end the madness.

Scott Levine's New Poetry and Podcast Interview

Acceptance of Autism 

Wanting to be free

Wanting to be me

Trying to make people see

And accept the real me

Some people think my voice is too loud

And that my mannerisms strike them as being odd

This perception of me by others keeps me feeling blue

But there are plenty of struggles in life that I must get through

I am determined to show my critics my true personality

Hoping that people move away from their narrow-minded mentalities

I want them to know that I am a bright young man

Who is willing to take on as many challenges in life as I can

I want to make new friends and create a new start

I like to develop new relationships with an open heart

I hope to be accepted for the person that I am

So people can understand a true autistic man

Fall in New England

Fall is such a beautiful time of year

There are plenty of sites to see here

Leaves with bright colors orange, yellow, and red

Signaling a change that the year is near the end

But fall is also a time of new beginnings

It is a time to start to learn new things

A time to look at the world in a different way

A time to learn new strategies to handle each day

Let’s take this time of change  

And focus on new ways to think

Let’s give individuals with challenges a new look and rearrange

And find a common link

Fall reminds us to turn over new leaves

To think about starting new goals to achieve

I call on the world to change perceptions

And give all of us a new reception

I want to make new friends and create a new start

I like to develop new relationships with an open heart

I hope to be accepted for the person that I am

So people can understand a true autistic man

Podcast Link

Not Okay: Autism Speaks Owes Kassiane Sibley More Than a Public Apology

by Kim Wombles

The number one search term for Kassiane Sibley and Autism Speaks is a pdf file that was supposed to be removed, was removed in 2012 after the autism community lit up in justified anger that a major non-profit was violating copyright as well as the author's wishes.

Whiting it out while leaving the text in the file so it would still get hits was an offensive move. Restoring the original whitewashing with a new url sometime in 2013 (according to Alyssa) is nothing short of a dick move.

Despite deep reservations about the organization, for a short time I tried to work with it in my city, since at the time they were the only way autism families got to meet each other. I felt the former president, who I had met and talked to, genuinely listened and wanted to improve the organization. I knew the people in my city who worked on the walk were genuine, real, and invested in making autistic individuals feel welcome as they were and in providing support for them and their families.

I was able to live with the cognitive dissonance for two walks. I felt the volunteering done by my family and students to make the walk happen was good work for the local community and I gained many friends in the process. I also saw some things at the paid worker level and in the organization itself that troubled me deeply. It was all about raising the most amount of money with the least amount of help from the larger organization. It was push, push, push.

I also witnessed a failure to recognize the families' concerns and interests.

I walked away from the organization quietly and when I finally did publicly announce I couldn't support it, people who had treated me like a traitor wanted to welcome me back like I'd just suddenly seen the light.

I don't like agendas nor people whose interactions with others arise out of their agenda.

I came online looking for community, for my tribe, for people who would understand my kids and me. And I was very blessed to find numerous kindred spirits, people who have become my closest friends and my strongest supporters. I found controversy and hate along the way, which I have no interest in, and it's amazing when you don't want to incite rioting and vitriol how much more supportive the people in your life are.

I know that there's a true autism community online and in the real world as I experience it every single day of my life. My facebook friends are autistic individuals, parents, the whole gamut, and with a diversity of beliefs, but the one thing we share in common is our desire to be there for each other in the good and bad times and in all the in-between.

We have thousands of people represented on this directory, from those who despise Autism Speaks to those who still support it. And I wouldn't dream of going on any of their pages and deriding them. I'm here to support at the individual and family level.

What you will no longer find on this website, though, is any link to Autism Speaks.


Over the years, their actions have varied from somewhat hopeful to downright evil. Some of their rhetoric approaches, if not reaches, hate speech. They incite fear of autistic people, and they make families think that their lives with their autistic children are doomed.

Raising autistic children, much like raising children, is not easy, but it is an amazing experience, even when it is a difficult, painful experience as our hearts break for our children's struggles.

I love my autistic children and my BAPpy husband and extended family, and I also happen to love my BAPpy self. I didn't meet people like me till I found the autism community. They made me realize I wasn't alone and that there were plenty of people who got me, got my obsessive interests, even appreciated them.

Kassiane wrote a lovely post in November that I recommend highly, that is by far the best response to Suzanne Wright's horrible op-ed.


Autism Speaks, you owe her more than a public apology for profiting off of her work without her permission, for disrespecting her as a published author with the right to say no to having her work appropriated without permission, despite making it clear she wanted her work and her name nowhere near your stuff.

You owe autistic people an apology for making them into caricatures to profit off of.