On Not Being “Pretty”
My friend Cara wrote this awesome article about being "ugly" disabled. You should click on the link and read it. Go on, I'll wait. Isn't it great? The article got me thinking. Like Cara, I also have cerebral palsy. I sometimes use a transport wheelchair because I have poor balance and I can't stand for too long. When I sit down, my body "flops", or it slowly leans to my right side until I am almost lying down. When it doesn't lean to the side, it tends to relax too much, sliding down the chair. An upright position
Accommodations – They Make All The Difference
Accommodations are important and they work. I should not be making a big deal about it. The ADA is 25 years old. Sadly, getting the accommodations we, disable people need, is often the opposite of simple. If you have been reading my posts, you know that I am very visibly disabled. I am also proud, and I don't try to be someone other than myself. I do require a lot of supports, and once I have them, I can do anything I set up as goals. I have goals, or simply things I want to do, that most people
Uncontainable Presence
You are anywhere You are anytime Daring and enticing Changes unexpectedly predictable The obstinate constant I see your bright presence Piercing my eyes Crawling into my brain The pain comes swiftly And then, the deafening silence My body shakes in your presence Uncontrollable moves A dance of two wills The music is mute Rhythmically disordered Darkness and pain I'm lost in a sea of dread Forlorn as you carefully exit Leaving behind misery I tremble as the silence roars As the pummeling beat of you presence leaves The sky cracks open in blue A blissful fatigue Exhausted excitement But your
Amy Sequenzia: Does it matter?
Should it matter that some of us are labeled intellectually disabled? Read the definitions, look at us in a realistic way and ask yourself; Does it matter? Aren’t we all worthy?
Joey Furlong, hospitalized fourth-grader asked to take a standardized test, becomes a symbol in high-stakes testing battle
News that a fourth-grader in the hospital for severe epilepsy was asked to take a standardized test has angered parents and galvanized the anti-standardized testing crowd. As reported in The Washington Post , Joey Furlong was lying in a hospital bed, hoo
Stanford Scientists Demonstrate Brain’s Capacity to Change in Response to Education
"No one is born with the innate ability to recognize numerals."
Bureaucrats
You look at me But you don’t see me You talk about me but not to me You think you know all about me But you deny my humanity You think I don’t have wishes You believe I don’t have plans You don’t respect my basic rights According to you I should be grateful That I have a place to sleep That I have three meals a day If I say I want to go out You ignore me To you I am only a burden Too disabled to have an opinion To you I don’t count as a person
Amy Sequenzia : Friendship and Respect
It is a mistaken idea that we, autistics, lack empathy. It is also a myth that we are not social. My friends and I, we understand and respect differences. And we understand that we all have a lot to contribute, in a diversity of manners.
Amy Sequenzia: “Storm”
"Storm" a poem by autistic self-advocate Amy Sequenzia.
Everything’s fine, he’s doing great and other half-truths
Writing about Sebastien and the Setins for One Day without Starbucks for Sebastien and Mitochondrial Disorders, made me think about how difficult it can be to talk about your child's very serious medical issues, even with good friends. I have many dear friends who have children that are currently living with or have had life threatening issues. Every single one of those kids and their families, make it look easy. So easy, in fact, that some people don't realize how hard it can be for many kids - going to a million doctors appointments, the surgeries, not feeling well. Often, it's hard
Landau-Kleffner Syndrome
Landau-Kleffner syndrome, or acquired epileptic aphasia, is a rare childhood disorder of the central nervous system that affects boys two to three times more than girls. The syndrome is characterized by seizures and the gradual or sudden inability to und
Saving Grace
Addison Lennon met all her early milestones: she sat up on time, crawled on time and walked on time. At about 4 months, however, she had a seizure, and her parents started to worry. By 9 months, her head appeared small for her age. Her neurologist reassured the family that Addison could still be within the lowest 5 percent of the normal range. "We were thinking she was typical," says Kari Lennon, "she would be in that 5 percent." At 15 months, however, Addison had another seizure that was a lot more severe. She had been tested for
Epilepsy Foundation
The Epilepsy Foundation of America® is the national voluntary agency dedicated solely to the welfare of the almost 3 million people with epilepsy in the U.S. and their families. The organization works to ensure that people with seizures are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted and valued in society; and to promote research for a cure.