My daughter Amy turned 43 last week and on Saturday we’ll have a big party for her. Amy is party girl through and through and I always look forward to her birthday with delight. But yesterday my happy anticipation was dampened by a casual comment from a friend, “I know you must be tired of having little kid birthday parties after all these years.”
What?
Yes, I’ve given and/or helped plan lots of parties for Amy, parties that still involve aspects often associated with younger children. Amy has intellectual and physical disabilities; she requires more care than my friends’ daughters and sons. Sometimes I’m exhausted by extensive mothering duties I’ll never out grow. But tired of parties for Amy? Never!
Harilyn Rousso’s new book, Don’t Call Me Inspirational: A Disabled Feminist Talks Back, caught my attention the instant I glanced at the title. The anecdote above is part of the reason. Rousso, whose complicated birth resulted in cerebral palsy and noticeable physical impairments–slurred speech, facial grimaces, an uneven gait–addresses head on the ways many well meaning people assume that anyone with a disability is to be avoided, ignored, pitied–or admired simply for living with her disability. She writes, “I know, I know, if you were me, you’d never leave your house and maybe even kill yourself. So, I am inspirational because I haven’t committed suicide…”
Parents of children with disabilities often elicit some of these same reactions, especially if they are single parents. I have cared for Amy pretty much on my own since she was a young child. I have plenty of experience with the ins and outs of caring and advocating for first, children, and then gradually disabled people of all ages. I know many of the realities; I know the heartaches. But I also know the joys.
Rousso gives us an intimate glimpse of how far we’ve come and how far we have to go–as a society and as individuals–in providing not simply equal access, but equal acceptance and genuine inclusion. Her searing insider’s view of feminist organizations and what they have NOT done to support and learn from women with disabilities is part of her story. It is a story that should be required reading for every feminist.
The evolution of civil rights for people with disabilities built on the civil rights movement of the 1950s and 60s. By 1975 the passage of the federal Education for All Handicapped Children Act made it illegal to deny access to public education to disabled children. But Rousso, whose mother insisted her daughter could and would do everything other children did, attended public schools years earlier. Dealing with substantial physical challenges, but gifted intellectually, she went on to earn a degree in economics from Brandeis and to train as a therapist at a psychoanalytic institute. She was asked to leave at the end of her first year—the leaders of the institute thought the signs of her cerebral palsy would distress clients.
Rousso writes with painful honesty of how this obviously illegal, enraging discrimination led her to a clearer understanding of prejudices against people with disabilities—her own as well as those of others. The incident, as hurtful as it was, helped her to move from denying her disabilities to identifying with the disabled community, and to “embrace my identity as a person with a disability still further.” Moving reminders of how slow and incomplete this process is for the author and for society are scattered throughout the memoir.
Rousso was a feminist before she was a disability activist. She was puzzled by feminist obliviousness to the double (or triple, if you were a women of color) whammy confronting women with disabilities. As a board member of various feminist organizations, usually the first and only disabled member, she experienced the excruciatingly slow pace with which many of her new colleagues came to understand these dynamics. Her ‘outsider’ status was one often shared by women of color, she later discovered. Writing today, she notes “[F]eminists have become more inclusive…[But] even today disabled women are more likely to be included out of obligation…They are not seen as a rich source of diversity. The welcome mat is not yet out.”
The memoir’s 52 brief chapters resemble a conversation with a new friend. We learn first a bit, then a bit more about her life; gradually additional details emerge as the acquaintance deepens. Rousso’s book has the power to trigger further conversations–conversations critical to moving beyond the damaging misconceptions and prejudice still surrounding people with disabilities.
Most feminists, particularly those of us with close personal experience with disabilities, think we understand the issues. We think we are doing what we can, maybe even all we can. Maybe we are. Maybe we aren’t. We need to talk about it.
Comments 21
Mary Ellen Capek — June 21, 2013
Yeah, Susan!! Thoughtful review...thanks for writing it!
Sophie Sa — June 21, 2013
Thanks, Susan,for this important reminder of the battles still to be fought. And Happy Birthday, Amy!
Leslie R. Wolfe — June 21, 2013
Thanks for this, Susan! And, please look at the Center's series of Barbara Faye Waxman Fiduccia Papers on Women and Girls With Disabilities -- featuring great authors from USA and around the world. All of the Papers are at the Center's website: www.centerwomenpolicy.org.
Leslie
Leslie R. Wolfe
President
Center for Women Policy Studies
Nadine B Hack — June 21, 2013
This is a wonderful piece Susan! I just shared it on Facebook, Google+, LinkedIn and Twitter because I hope many more will read it!
Mary Potter — June 21, 2013
This is a serious wake-up call for those of us still snoozing in ignorance. Thank you Susan, and rock out, Amy, on your birthday!
Mary Scherf — June 21, 2013
Thanks for bringing attention to this book and this issue, Susan. I'm the mother of a young adult son on the autism spectrum. I bump up against internal and external blind spots frequently. Happy to have another resource. More than ready to have a conversation. Hope there will be room to talk about sons, too.
Karen Lachance — June 21, 2013
I was just thinking of Amy the other day and how I missed seeing her on special occasions at the Centers. She brought joy and enthusiasm with her to every event and it was contagious! Happy Birthday Amy!
Barbara Hayes — June 21, 2013
Thank you for this, Susan! You bring so much to this conversation...direct experience, broad perspective, love. We all miss Amy and wish her the best and most joyful birthday ever!
Deborah Siegel — June 21, 2013
So beautifully stated, Susan, and HAPPY BIRTHDAY AMY! Thank you for this wise and heartfelt post. We are all the better for what you share.
jane vennard — June 21, 2013
I just tried to order Rousso's book at the library. It is not in yet. I will keep trying and make sure they get at least on copy! Thanks for your wisdom and compassion and Happy Birthday, Amy!
Friday Roundup: June 21, 2013 » The Editors' Desk — June 21, 2013
[...] Feminists and Women With Disabilities: Conversations Needed on Girl w/ Pen [...]
Jean Kilbourne — June 21, 2013
A wonderful piece, Susan. And happy birthday to Amy!
Lidwien — June 21, 2013
I think that you hit a really raw nerve there, Susan. It is easy to say the right things but to really own the attitude and mindset you are describing and have lived up to (and undoubtedly at times have struggled to live up to) is a challenge. Happy birthday to Amy and what a thoughtful and thought-inspiring post.
peggy keon — June 22, 2013
Couldn't say it any better than the previous comment by Lidwein, so I'd just like to second that.
Thanks so much for this post, provocative and really important for us all.
Happy birthday to Amy!! and love and admiration to you.
Anne Noonan — June 22, 2013
All points well taken! The intersectionality of all of our social locations can get so tiresome, but we have to keep working at it/them. Thanks for writing this.
Weekly Feminist Reader — June 23, 2013
[...] We need to talk about disability and feminism. [...]
Jim Wice — June 24, 2013
Excellent review SUSAN! Happy Birthday to Amy!
Allison Kitfield — June 24, 2013
As always, thoughtful and provocative. It may not be politically correct but the older I get the less I see of courage in this world, so I will continue to say you are an inspiration. But thank you for the recommendation and I will try to find the book. Happy birthday to Amy, and equally heartfelt, to you. May this next year be full of exploration, love and delight for you both.
Sue Wang, @Connect2Self — June 24, 2013
Susan,
Thank you for this post. Incisive, clear, and authentic. I resonate with you and Russo. I had lost a newborn to forceps post-delivery. If he had survived, and I wish he did, I imagine that he would have had CP. And what gift that would have been to be able to be with him in physicality, in this lifetime.
Having our children with us is a gift. Disability is a teacher, and boy we as a society need lessons. I wish you and Amy a really great birthday. Her spirit is one of fun, and we need that energy too in this world.
The Round-Up: June 25, 2013 | Gender Focus – A Canadian Feminist Blog — June 25, 2013
[...] Susan at Girl W/ Pen says we need to be having more conversations between feminists and women with disabilities. [...]
harriet washton — June 26, 2013
Susan,
Thanks for putting me on your list. This is a wonderful article and one that should be required reading for all pediatricians and those involved in the care of these children.
Happy birthday to Amy. Glad I got to spek with you for a few seconds at reunion.