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, we 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 Coach Roberts is a man, and 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 by 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 that 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; Â (sorry about my language here, Mom), 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.
****
I do have my copy of this book which, as we are leaving my brother’s place soon to drive to Mexico and will be unable to bring with me, I would like to pass along to someone who would like to read it. If you are in the US, I’ll mail it to you; if you are abroad, I’d appreciate it if you could send me the postage through PayPal (- I hope you understand; we are on a pretty tight budget now).
So just leave a comment – I’ll choose someone through random.org on the 15th and will mail the book out then.
But I really hope that you’ll just go and buy it.
Up Syndrome
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.
Sounds like a great book! I would love to read it!
I loved reading your review of this book. I had heard about, thought about buying it, then I started questioning how it would make me feel. I mean, did I want a glimpse into her life knowing that I would picture Carter…years ahead….in the same situations. Food for thought, for sure. Safe travels xo
Same…I’d love to read from her perspective..
WANT. Want, want, want, want, want. THIS is what we need – stories in people’s own words about what growing up was like. It’s going to be uncomfortable and painful for us parents, but we have to hear it.
Though now I’m kind of heart broken at the idea of Ro being jealous of her sister in this way – never even crossed my mind. And I know those feelings could happen between any pair of sisters. But still. *sigh* Just more things to think about, I guess!
Great review … brought up a topic/area that DRIVES ME NUTS. While I try never to dis my daughter’s experiences, as a speaker and performer she gets so much attention and so many kudos for talking about her bullying or alienation experiences, and people don’t really want to hear so much about her circle of friends, her “best friend since elementary school” (still friends by the way, a very gift writer and visual artist who had her own challenges growing up having been labelled highly gifted AND dyslexic), or mentors and young women in a dance company that formed her key circle as she was growing up. People always want to know how she overcame her challenges. And if that is the question, then that is how you frame the answer. And, as a mom of a 23-year-old (nudge, wink etc…) I am not really allowed to refocus her attention on the question, except when asked, but I do (when allowed, at odd times) trying to inject this discussion in to her thinking/framing her experience. I never want to take away from what ever feelings of alienation she has, BUT I do also want her to actually look at the overriding pattern of her life, which, frankly, has been so empowering and supportive. So. I don’t think its just parents, I think its wider society and fits into the inspir-porn area. WE don’t want to ask how to BUILD (or start) caring communities, we do want to ask how to STOP bullying. I think its the wrong question. ANd I think it makes a difference in how successful you are (or aren’t).
Would LOVE to read this. 🙂
I need I read this. At our Buddy Walk recently one of the speakers had Ds, and while I couldn’t hear everything she said since I have a noisy child, what I did hear was a string of platitudes that were obviously scripted. Things like overcoming, etc. and I just felt like it wasn’t really a representation of her real experience. I want to read and hear examples, real thoughts and feelings. And I do know several young adults and high school students with Ds now who say they are having a great school experience and I believe them. So I know it isn’t all doom and gloom. I worry about all this too, but homeschooling freaks me out since I know my daughter is often reluctant to learn from me. And I think peer modeling will benefit her. And I need a break. And I want her to be included. But not if it’s inclusion at his kind of cost. Anyway, this is a great review and I am excited to Readme book.
Wow. Typos galore. Sorry.
Laugh. Out. Loud.!!!
I’d love an opportunity to read this book! (Pick me, pick me!)
So this is something that I wonder quite a bit about. I want the self advocate voice to come out, but I, like you, hear the overcoming stuff andwonder where it came from, wonder if she wasn’t influenced, etc. Well, we are all influenced by our families, right? Does a person with ID somehow end up in a different category because they are not seeing their disability in a certain way? Like sometimes i feel like there’s this implication that a person might have had a better self image, but for their ID. That makes me uncomfortable. I’m not being very articulate at 2 in the morning, but I hope you get the gist of my struggle.
On a completely different note, happy travels! One day we will have bacon and kimchi fried rice together.
Yes!
and Yes! Hopefully on a beach someplace!
I love that Megan wrote a book. Not an easy read (and the lack of editing threw me for the first chapter or two), but I love her voice. (You don’t need to enter me. I already have a copy of the book.)
Hi Meriah — I am THRILLED to hear that this woman’s work is largely unedited and raw. THis is what I was hoping to read in The Reason I Jump — by the 13 year old Japanese teen with severe autism who is non-verbal and typed it by pointing to an alphabet grid. Instead, it is translated to English and then (in my opinion) edited so much that it’s quite polished and sounds more like a British teen speaking in terms of British-isms that I’m sure teenage Japanese boys don’t use when speaking Japanese (edited by David Mitchell, who lives in Ireland, author of Cloud Atlas). I’m really glad that this woman was able to tell the story as she wanted to tell the story, not with certain bits edited out because they didn’t fit the view other people might like to have of life with Down syndrome.
I’m interested in knowing what you think you can learn from Megan’s experience that would make you think you can protect Moxie from being friendless as a teenager or young woman. Does Megan identify something that her parents missed in not supporting her in friendships? Is it really about her parents and what they do? Being the somewhat cynical and seasoned parent of a 19 year old with intellectual disability who did everything IMAGINABLE to nurture friendships when my son was young and only really eased up in the last year or two, I think it’s a fallacy to think that you as a parent can change the outcome for your child in that area. In suggesting that, you kind of imply that every other parent out there whose older child struggles with being ostracized and friendless didn’t “do” something and that if only they’d done that, things would be different. But it’s so much bigger than that individual family. It’s the culture and all its embedded stereotypes and deep-rooted hatred toward people with ID. I used to think I could actually change the outcomes for my son, including in this area. Now I just hope I can do something before I die to change general public attitudes. I haven’t read the book, but I think it’s unfair to cast her coach in the light of a potential pedophile. Would it be better for all male teachers/coaches to keep themselves emotionally closed off from female students so that those around them don’t think they have alterior motives? Sometimes one good person can play a huge role in a student’s life.
Thanks for sharing your take on the book. I hadn’t heard about it (which is unusual!).
Hey Louise!
I *totally* agree with you, re: culture. Completely. Which is why we are in search of a culture that will be more welcoming towards Moxie. The training center/intentional community will also hopefully help. We are hopeful we’ll find it.
About my getting freaked out because of the vulnerability of Megan in school and her coach – that part I need to put out there because I think people need to be aware of this and to watch out for potential abusive situations. You say – and I’m paraphrasing here – that one male person can make all the difference and I agree – it will only take one pedophile to make all the difference. There are too many instances of a vulnerable person with a disability who is abused – statistics are as high as 80%! – to ignore this and to hope for the best.
Hi Meriah — pedophiles aren’t just male, My adopted daughter was abused by a predator “nanny” who worked at her orphanage (and abused all the girls there). I totally agree that people need to be on the lookout. Not having read the book, I don’t know if there was something in it that suggested something inappropriate. But if there wasn’t, I’m not sure what the take-home message to parents is from what you’re saying. Do you refuse to allow your child to have close relationships with anyone in authority — male or female — outside your family? Would Megan have been better off not having had this relationship (which sounds like it was benign) than having it?
What I said was that “one good person” can make all the difference in a person’s life — and by that I meant one good male or female (who obviously is not a pedophile!) Would love to hear more about your intentional community xo
Oh my, this book sounds fabulous! I would love to check it out as I am a mom to a 28 y/o boy who has Up Syndrome 🙂 Thanks so much.
I would love to read this book! I would not like to read this book, but my heart yearns to know what’s going on in my daughter’s mind, hurts and what I’m doing wrong and all…. Please enter me!
I love reading first-person accounts. It sounds like this writer is still finding her voice, but it is definitely a voice which needs to be heard!
I think there are many uncomfortable areas like the “overcoming” bit. Like the videos that show a “typical” peer “reaching out” to the kid with disability and therefore making it possible for him/her to shine. Yes, typicals do need to reach out, but this image creates the impression that the kid with disability is not able to shine without this help.
Likewise, the cure vs. acceptance debate. Are “cures” coming from a place of inclusion (to help the individuals reach their own goals) or from a place of marginalization (to help others not be inconvenienced by the person’s disability)?
Speaking of inclusion, I’d love to be included in the giveaway!