On Being Alex Barton

Mrs. Marcia Cully
Morningside Elementary School Principal

Dear Mrs. Cully

My name is Stephen Kuusisto and I am blind. I was born blind in the mid 1950’s—an era when kids with disabilities were not encouraged to attend public schools. Because my mother was tough minded and persistent I went to the Oyster River elementary school in Durham, New Hampshire instead of the Perkins School for the Blind. Nowadays I make my living as a professor at the University of Iowa where I teach graduate and undergraduate courses in creative writing.   

When I heard the story of young Alex Barton who was “voted off the island” known as Kindergarten because he has behavioral problems associated with an autism spectrum learning disability, and that accordingly his teacher and classmates were simply annoyed by his presence, well, aside from my natural incredulity that such a thing can still happen in the United States, I felt a flood of long repressed tears. You see, I was once a kid like Alex Barton.

I still carry deep under my skin the barbs and taunts of mean spirited public school classmates who found ways to bully me simply because of my disability. I wrote a best selling book about my childhood experiences called “Planet of the Blind”. That book has now been translated into 10 languages. I also host a blog called “Planet of the Blind” where I advocate almost daily for the rights of people with disabilities.

Like many “baby boomers” with disabilities who helped to pioneer the concept of mainstreaming for disabled kids I keep hoping that the vicious and ignorant behavior that I experienced in public schools will at last become a thing of the past.

So you can imagine my deep distress upon hearing the story of young Alex Barton and his teacher Wendy Portillo. I won’t belabor the point. I’m certain that your school district and school board has been hearing a good deal about this affair.

I simply write in this instance to say that unlike the media or those who would take sides on this shameful matter, I am grieving for Alex and his family. The history of disability features a long timeline of stigmatization and I know personally how hard it is to overcome the effects of ridicule and substandard teaching.

I wish you and your community good luck and good sense. I hope it’s not too much to ask that your school district will now take this opportunity to think hard about disability with a renewed sense that kids with disabilities are real citizens too. 

As a final disclosure: I am posting this letter on my blog with the hope that I might hear from you in some affirming way. I’m sure we can agree that there are real lives in the balance. 

Sincerely,

Professor Stephen Kuusisto
The University of Iowa

Holy Cow - would ya look at all these LINKS!

Comments

[lastcrazyhorn]

Hey, thanks for the link! I added you on too, btw. :) I also stuck you in my blogroll. I like your blog.

[Connie & Steve]

Thank you, lastcrazyhorn. We've done the same and have added you to our blogroll...Pleased to *meet* you!

[lastcrazyhorn]

:) I'm a graduate music therapy student with Asperger's. :)

[fridawrites]

As the mother of an autistic spectrum child, I am moved to tears by your letter. I still haven't been able to get the emotional distance I need to write about this in a clear way. We're dealing with instances like this in a much smaller scale, thank God, but it's very difficult for him.

[Georgia Whitney]

I'd like to vote that teacher's sorry posterior off an island...what a moron.

I also sent the hyperlink for your blog to my stepdaughter, Tena, whose 5-1/2 year old daughter Scarlett, is autistic. Tena's an awesome parent and advocates like crazy for Scarlett, and Scarlett is an equally awesome kid. I am incredibly proud of them both.

[william Peace]

Social ignorance and prejudice in the school system seems resistant to change. Thus this story reminds me of my own childhood. When I began to have significant health problems one of my teachers, a Catholic nun, told me I did not have to study or do homework like the other kids because I was now "one of God's special children". When I told this to my mother I saw steam come shooting out of her ears. In a terse voice she said she was going to my private Catholic school and would be home in a few hours. When she returned she told me I was going to public school beginning tomorrow. The tone of her voice was emphatic and she told me I was no different than my peers or siblings and I had better not forget this fact.

[Rebecca Shea]

Thank you for this letter. While I've blogged on this, my own emotion has kept me from attempting to write a coherent letter. And as an Oyster River graduate myself, I can assure you, they are still working on it, but they are trying.

[Melissa Barton- Alex's mom]

Professor Stephen Kuusisto,

I feel honored that you wrote about my son Alex. I know that your attempt was to reach Marcia Cully, principal of Alex's school. However, I feel compelled to tell you that you made a difference in me just now as I read your blog.

Thank you.

Very truly,

Melissa Barton
Proud mom of Alex