Although I’ve had a disability since I was four years old (that we know of anyway), I was mainstreamed at all times. In my family, “disability” was something reserved for people who used wheelchairs. The answer to any disability-related issue I may have had growing up was invariably:
- Try a little harder
- God only gives you what you can handle
- Suffering is good!
Saying I tried to “pass” and fit in among the non-Deaf, non-disabled is like saying the Pope is Catholic. Yeah, well, duh. I bent over backwards and twisted myself into loops to try and pass! I happily applied hairspray into a firm helmet of lacquer to keep my hair from flying back and revealing my dastardly, huge medically-unsexy-looking hearing aids. HEARING AIDS! Who wears the suckers when they are FIFTEEN YEARS OLD?! Who has their perfectly-hearing grandparents cutting out coupons for hearing-ware for them?!
The only people who were lower than me on the totem of uncool were people with developmental disabilities. I wouldn’t come within 10 feet of someone with a developmental disability. It’s the curse of those of us that desperately want to be “normal” in that sometimes we can be the most cruel. Or sometimes we want so badly to fit in that we shun anyone who might might expose us to be who we actually are: different.
After I started working at UC Berkeley and met fierce people within the community who had a disability, I started to realize that my fear of being labeled “deaf” or “disabled” had a lot to do with this perception that I had of “disability” and “deaf” equating helplessness, incapability — and perhaps even stupidity. Uncool, for sure, uncool.
Meeting people that I found inexpressibly hip, savvy, and adept who had a disability was huge for me. I met tens, hundreds of people at UC Berkeley and in the San Francisco Bay Area that I oozed respect for. Capable, smart, funny people. People who did something with their lives, people who were often good looking, well dressed, and disabled.
Liane Yasumoto’s Superfest pushed me further by exposing me to people with disabilities high on the artistry level. Sue Schweik’s Disability Studies course, my mentor Sarah Dunham and her book recommendations, and theOral History Project all swirled in front of me before settling into a new and complete picture of disability that looked nothing like what I once thought it to be. This new look — the new picture — was full of opportunity. It had pride. Beauty. Humour and grace.
It was not — is not — about sorry, sad and tired cliches.
Releasing feelings of guilt and blame when your child is born with an illness
I'll never forget the moment I realized I didn't get to hold my baby right after his birth like I was "supposed" to. It wasn't... Read more
But then I was told my daughter would be coming with Down syndrome — a developmental disability.
My world crumbled and all the self-acceptance, pride, and love for disability was stripped clean off me, reverting me to my terribly insecure 15-year-old self. Every injustice, every hurt, every wrong I’d ever suffered in my life came back and reverberated in my soul, in my marrow, for the remaining six months of my pregnancy.
I was that kid they hit because she was scar-faced and Deaf; my daughter would know that pain. I was that girl scorned because she was different; my daughter would know that feeling. I was the girl who hurt so bad she’d get nosebleeds from crying because she didn’t, couldn’t fit in; my daughter would know that feeling.
People talk a lot about “right to life” in the Down syndrome community. It’s not that I don’t believe in a right to life; it’s that I have walked the walk of disability. I know first hand how hard it can be. To choose to keep my daughter, while knowing full well how difficult her life might be was without question the most agonizing decision of my life. Like all parents, I wanted to know that I was doing everything that I could to give my child a life better than what I had, and I wasn’t sure I was doing that by letting her live.
Ultimately, what saved us all was coming to an understanding that her life is hers. It is not mine. As Gibran says:
Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow…
Moxie has a disability, but how her life unfolds will be different from mine. Different by virtue of the fact that we are different people, different because I have walked this path and am more aware than my mother could ever have been with me. Different because she’s Moxie — and she has it, too.
What a perfect name for your daughter!
“Like all parents, I wanted to know that I was doing everything that I could to give my child a life better than what I had, and I wasn’t sure I was doing that by letting her live.”
Ok ladies, I know I’m not the only one who started bawling at this. What an incredibly heart wrenching thing to go through, Moxie and her siblings are lucky to have such a strong mother to look up to.
All I can say is I Love You. i’m a deafy, actually Heard of Hearing, but whatever. Can’t tell ya how many times my own parents have asked me pressing questions about “how i’ll ___” when I have kids, been trying for a year now…
Love Love this story! And little Moxie, total perfection!
“It’s the curse of those of us that desperately want to be “normal” in that sometimes we can be the most cruel. Or sometimes we want so badly to fit in that we shun anyone who might might expose us to be who we actually are: different.” THIS. So this.
I love the name Moxie as well.
I love you too! That’s all I wanted to mention.
I just want to say that I admire your courage–and (perhaps more importantly) hope. I am also a disabled mother. I terminated my second pregnancy after a prenatal Downs syndrome diagnose. I knew that I just couldn’t do it. My own demons from growing up different were just too present for me to take that journey. My husband, love him, was completely supportive. But it was the hardest choice I have ever made. Not a choice I regret mind you–just a hard one.
I am now pregnant again and all the tests have come back fine so far. I worry what my decision says about me as a mother, and I know I could eventually cope with the unexpected. I just couldn’t walk into it with fore-knowledge.
It’s absolutely, 100% a personal decision. I don’t know if I would have gone to term with a pregnancy if I had received less-than-glowing prenatal tests either. As it stands, of course, you never know how things will turn out, but still – it’s your ultimate choice. Your body, and your life are involved, so it’s up to you.
I hope that sounded supportive – I’m not being a very good writer today.
It sounded wonderfully supportive. Thank you. I sometimes worry about sharing my story. Particularly with parents of children with T21, because I totally get why it could be horrid and offensive. But the fact is, this was the BEST choice for our family. I know that.
Lots of love coming your way! I don’t know what I’d do in your situation, either. I’m so glad that your husband supported your choice and that you feel at peace with it. I hope that your current pregnancy is a dream!
I am a woman with a disability. I work with people with disabilities. If my beautiful daughter had had downs or spinal bifida, I know I would have made the painful decision to end the pregnancy. I cannot outlive a baby with a 37 year head start and I believe that I cannot ask my neice or nephew to step up when they were only 4 and 6 when I was pregnant.
I wanted to clarify that was in the response to the OP not the writer. I admire that well… Moxie. It’s just not a path I could take.
For me, this kind of story is what being pro-choice is about – your CHOICE to bring your daughter into the world, with full understanding and acceptance of the challenges she’ll face, was really yours. It’s a testament to your strength and capacity for love.
And how lucky is Moxie, to have such a savvy, confident, educated mama who can understand her struggles and bring her up with the pride and self-confidence she deserves!
Disability wouldn’t have made a difference for me either, it’s still my baby, still the baby my body worked hard to make, and still the baby given to me. But I can understand those who aren’t sure they could be strong enough, or have the right things to give a baby with disability….
I was reading a book you may enjoy, or have already enjoyed. The Memory Keeper’s Daughter. It is about a family in which the father makes a difficult decision on whether or not to raise a baby with downs syndrome, or to give it up, it was set in the 60’s when they called it “Mongoloid syndrome” I thoroughly enjoyed it, and felt so happy for the outcome of the book.
This post means a lot to me. So much has been written about birthing and raising disabled children, but most of it is from able-bodied parents. It’s nice to see it addressed by a parent with a disability.
My husband and I are currently trying to make a child of our own. Both of us are mentally ill (I have Bipolar Disorder and OCD). He has other disorders. We’ve discussed the pretty high possibility that our child will be mentally ill as well. As we’ve come to the agreement that we, as people with mental illnesses ourselves, are sort of in a unique position to raise a child who make face the same challenges. I know that you and your daughter do not share the same disability, but you’ll share many of the same experiences. I want to hope that if my child does at some point have to face the same issues I did, that my experiences can help them reassure them and comfort them. In a really weird way, it would help me believe that my illnesses had some purpose in my life other than random chance. Kids with disabilties deserve parents who can make them feel like they have no limitations, so good for you!
Thank you so much for writting this, my daughter is blind and its been a struggle I wasnt prepared for. I worry a lot and its just nice to read a positive story.
I came across your blog through a friends page on Facebook. I’m a parent with a disability and my daughter is also disabled. You’re not going to believe this (I hardly can) but I saw Moxie, her brother and her dad on Friday! I was taking my daughter to PT and I loved Moxie’s squeaky shoes. When my daughter gets older I have to get her a pair. Anyhow, thanks for sharing your experience and being honest about it. My husband and I both have genetic disabilities (different types) and we knew that our chances of having a child like us was pretty high. We’re both very connected to the disability community and didn’t mind having a child with a disability. It was having child with a double-dominant disability that shared the you know what out of us. Anyhow, I hope we our paths cross someday. I love hanging out with other disabled parents.
I really admire you for writing so honestly about your experiences here. I am not disabled, and yet I still really identified with a lot of what you wrote.
I inherited a relatively minor (and easily “correctible,” although I didn’t choose to go that route), yet highly visible, physical mutation, and for that and other reasons I have spent most of my life feeling like a social outcast. As I get closer and closer to being ready to have children, I often think about how my kid, just like any other person, might end up having something about them that will cause them, too, to “not fit in” or otherwise have an inescapably challenging life. And (even more distressingly), I also think about the other end of the scale–what if my child is “perfect” and has an incredibly easy life? So much of my identity is based on the challenges I’ve overcome–how could I relate to someone (even my own kid) who didn’t have to struggle like I did? Would I resent them?
The future is unknowable, which is both a blessing and a curse. All we can do is try to do the least harm to our lives–and others’ lives–as we can.