Laura Hershey: Disability Rights Activist Extraordinaire

Laura Hershey’s parents didn’t listen to her doctors’ assumptions that spinal muscular atrophy would end her life when she was a child. Forty-four years later, Laura is still here, and isn’t planning on going anywhere.
Laura Hershey is a consultant, published writer/researcher, and committed advocate who has 20+ years experience as an activist for disability rights. You can read Laura’s writing at Crip Commentary, a web site she runs that discusses various aspects of disability rights. She’s currently pursuing her MFA in Creative Writing.
I spoke with Laura from her home in California. Here’s Laura…

What do you think are some common stereotypes of people living with disabilities?
I think the main thing is that people think of [one’s disability] as a private little problem, a tragedy. They don’t think it has anything to do with the world.
People with disabilities is one of the largest minority groups in the world. We need to recognize the existence of people living with disabilities to ensure that we have equal access and opportunity. I do not want people to think of disability in terms of charity. It’s a matter of justice. All people have rights and we have to ensure that those rights are truly available to people.

What are some issues that women living with disabilities particularly face?
Generally, things like unemployment, underemployment, invisibility in the media. The issues that all women deal with are issues that women living with disabilities deal with usually. As well as the issues that men living with disabilities deal with, or more so. Access to healthcare is a big issue. Access to primary care.

I’ve read that many young women living with disabilities are often not given proper sex education.
Yes, I think that’s true. Schools are giving less sex education anyway to anybody. But I think girls with disabilities get a lot of negative messages about their sexuality. That it’s dangerous. That they need to be protected from it rather than it’s a normal part of life growing up.

Over your 20+ years of activism, what successes have you seen and helped accomplish?
[Laughs] Oh, boy. I could go on for hours.
What are some big stepping stones?
I was a part of things like the International Women’s forum in Nairobi in 1989. Ten years later, in 1999, there was a lot more activism around disability by many more countries.
Of course, the passage of the Americans with Disabilities Act. I am still working with communities to get that enforced, which has been a real uphill battle—increasing awareness within the disability community for rights, and to be able to talk about your life in political terms. Understanding issues like employment discrimination, assisted suicide and access barriers—these kinds of things are really significant political issues that need a political response.

Do you think President Bush has done anything in support of disability rights?
[Laughs] You mean besides vastly increasing the disability community?

Oh, by the war. Yeah, besides that.
Every administration has done a few little things; spent a little money on assisted technology, things like that. I guess the biggest positive thing that this administration has done is give grants to states to shift their Medicaid programs more away from institutional care and more towards healthcare. That’s a big positive.
I think in a certain light, it is overshadowed by the negative, like taking away public housing and subsidized housing. That has been a huge problem. I think the 2 billion dollars a week that we’re spending on the Iraq war will ultimately prevent creating aid for further programs with more and more people with disabilities coming back from the war.

What disability rights issues do you think readers should pay attention to this year?
All of them. [Laughs]

Any new organizing going on?
I don’t know if you heard about it, but a small girl in Washington state named Ashley, she has significant physical and mental disabilities. When she was six years old her parents decided to administer some procedures in order to make sure that she never physically grows up. They removed her breasts and her uterus and spent two and half years conducting therapy so she would never get bigger, never menstruate, never mature physically or mentally. The parents argued two things. One of them was it enabled them to easily move her around and continue taking care of her. And they thought it would be best if she never became sexually mature because they said she would be at risk of abuse if she ever did.
There’s just so much wrong with this. It’s such a huge violation of mental and bodily integrity. What’s also scary about it is there’s an article published in a medical journal advocating that if you have children with disabilities they could be more easily cared for by their parents if they were kept small. I’m all in favor of children staying with their families without being institutionalized. But I don’t think the cost of care should be biologically enforced on the child by making someone remain a child. There are other ways to get help to a disabled child.
I don’t think this would happen to a boy. Imagine castrating a boy and saying, “Well, it’s for his own good.� I think girls, especially girls with disabilities, their sexuality is considered insignificant, irrelevant or dangerous.