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.