I’ve written a bit about how I’d love to have more adults with Down syndrome speaking and writing of their life experience, views on therapy and disability – much like the Autistics do within the Autism Community. I mean, us parents of individuals with Down syndrome can sit around and talk about Down syndrome all day long but we’ll never know what it feels like to grow up and live with an extra chromosome. Obviously, only a person with Down syndrome knows that – and we don’t often hear from those voices.
So I was really excited when my friend Shannon offered to send me a copy of Megan Abner’s memoir, Up Syndrome.
Megan is a young woman who has Down syndrome and I was eager to glimpse her life through her eyes.
First off: this book was not an easy read for me.
The writing had only been lightly edited and while that clearly showed through the choppy sentences, it wasn’t what made it difficult to read. In fact, the choppiness of the writing made sense to me after the first chapter as I could hear the author speaking in my head with it – through repeating certain phrases, I could feel the emphasis on the import of the subject. So while I was initially annoyed with the editing as I saw it as being kind of discriminatory (– why wasn’t her book as well edited as others? whyyyyyyyyyyyyyyy?), I ended up liking that aspect.
No, it was not an easy read as there were so many thought-provoking nuggets in this book that I mulled over for-ever. Megan’s depiction of school, for example, was absolutely heartbreaking. The teasing, ostracizing, the lack of friends. She says, “no one would have lunch with me, they wouldn’t even sit next to me because they’ll move down one seat or maybe two seats…Like they all didn’t want contact with me what so ever. That part did hurt. I had no friends… not one…”
Not one, that is, except for a Coach Roberts, who is her only friend. That completely freaked me out because Megan was pretty much in an absolutely ideal situation for a pedophile. I’m not saying that Coach Roberts was or is a pedophile but that situation was what a pedophile dreams of: a middle school girl with Down syndrome, completely friendless, he is her savior and so forth. Shudder.
Reading all that made homeschooling shine like a massive disco ball with a high beam set on it. I mean, I was already on the homeschooling bend but Megan’s writing about her school experiences scorched an area in my mind that was already tender. So… I don’t know.
Back to her story.
I enjoyed reading her straightforward approach to things. She really writes things like they are for her, rawness and all.
When I was walking alone, I saw how attracted the boys were to my sister. They were all attracted to her but not attracted to me. When we were walking down by the beach one boy said, “I’ll walk with you”… I could tell that he was bored, he was bored walking with me, and talking with me, both…I felt embarrassed when he walked away. What he did was not nice at all, when he said I’ll walk with you to be nice, that’s when I thought he was being nice but he wasn’t…
Those pieces hurt reading, because they were so easy to visualize. At the same time, I admit that I was delighted at her bullshit radar – that through her sensitivity, she can slice through wads of fakeness.
I would like to know more about all the “overcoming” she talks about – “overcoming Down syndrome” and so forth – I felt like those were lines that she learned in school or through family/community and they made me pretty sad. Like Down syndrome is anything to overcome, like she needs to have a “positive attitude” to “overcome” it – like that classic Inspirational Porn meme, “the only disability in life is a bad attitude.”
It reminds me of people talking about me overcoming my deafness – but this is the thing: I don’t suffer with my deafness. YOU suffer with my deafness when YOU are trying to communicate with me and I don’t hear; I suffer with my deafness only when – and let me capitalize this to emphasize it – ONLY WHEN the world around me is inaccessible. This is not a “suffer” thing; this is an “inaccessible world” thing. We can change that through access. So is this really about YOU or is it about ME? And is “overcoming” Down syndrome really about people WITH or people WITHOUT Down syndrome?
You see what I’m saying? So I felt like this was a bunch of malarkey that Megan grew up with – that her having Down syndrome was something to be overcome, that she had to have this so-called “education” (= read, tortuous couple of decades of friendlessness, being taught things of questionable relevance to her life and interests) in order to be “knowledgeable”.
Hindsight’s always 20/20, so this is where, as a parent, I want to learn from Megan’s experience. I want to make sure that I do everything in my power to ensure that Moxie has an education that is relevant to her skills and talents and one in which she is a valued and contributing member of a group. No way in HELL do I want her to be as friendless as Megan was; (excuse my cussing), and no FUCKING WAY IN HELL do I want my daughter to be as vulnerable as Megan was with Coach Roberts.
Moving on, Megan fills her memoir with stories about her family and I smiled through a lot of it. They really seem to have a good time together – just laid back, easy going fun. She deeply loves her family and cherishes what they do together… she writes,
…one thing that touches me the most, thats my family and the memories we all share together. Most of all going through the family pictures which had brought back a lot of special memories. Putting my heart into this and all of my feelings, I strongly hope that all of the reader’s feel what I feel.
And I think I got a glimpse of that.
Thank you for this book, Megan.
Up Syndrome – buy it, review it, share it. Let’s support Megan and help share her voice.