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.

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  1. EG
    Posted January 28, 2007 at 9:32 pm | Permalink

    Ooh, I forgot about poison ivy. (That’s what being a lifetime urbanite will do to you, I guess.)
    What’s Good Math, Bad Math? I’d love to check out a link, if you don’t mind.

  2. Sharon
    Posted January 28, 2007 at 9:38 pm | Permalink

    Alon writes: “So you’re evaluating this case not by its own merits, but by the merits you infer from looking at completely different cases in history”.
    Not at all. Just responding to your portrayal of medical bias and errors as “the rare stories in which the doctors were wrong” by reminding you of historical data showing otherwise.
    Btw, although it doesn’t seem likely that Ashley spends much time laying prone (remember, she cannot raise her head), in the event that she does, keep in mind that science came up with ergonomic support pillows for large breasted women to lay prone in comfort quite some time ago. Large breasted women do not have to undergo breast reduction surgery in order to sleep comfortably in a prone position!

  3. Sharon
    Posted January 28, 2007 at 9:40 pm | Permalink

    Alon writes: “So you’re evaluating this case not by its own merits, but by the merits you infer from looking at completely different cases in history”.
    Not at all. Just responding to your portrayal of medical bias and errors as “the rare stories in which the doctors were wrong” by reminding you of historical data showing otherwise.
    Btw, although it doesn’t seem likely that Ashley spends much time laying prone (remember, she cannot raise her head), in the event that she does, keep in mind that science came up with ergonomic support pillows for large breasted women to lay prone in comfort quite some time ago. Large breasted women do not have to undergo breast reduction surgery in order to sleep comfortably in a prone position!

  4. Posted January 28, 2007 at 9:55 pm | Permalink

    Sharon, my point was that doctors and parents make determinations for the children all the time, considering the relevant circumstances and particular issues for the child’s care. Of course Ashley’s treatment wouldn’t be appropriate in every situation. That’s a big fat “duh.” Saying this opens up the door to do this to all disabled kids is a straw man — if this is the best argument out there, then that doesn’t say much for those opposed to the Ashley Treatment.
    As for large breasted women staying comfortable, most large breasted women have the cognitive faculties to understand what hurts and why and how to alleviate it. Ashley does not have the faculties, and it’s extremely unlikely she ever will. Her parents had to act before she underwent puberty, or they would never be able to take such measures for her comfort. So they could allow her to undergo painful and frightening and confusing physical changes on the off-off-off-off-chance that she might SOMEDAY be able to understand what has happened to her body and appreciate and enjoy being an adult; or they could decide to err on the side of vast likelihood and make her more comfortable and less prone to dangerous diseases/situations.

  5. Tokaia
    Posted January 28, 2007 at 10:18 pm | Permalink

    EG, you’re way off. You’ve taken the crap your doctors and the TV tells you and believed every word, just like a good sheeple. I don’t think you know what the hell you’re talking about. In fact, a lot of the people here don’t. Most of the people here are just sheeple. You obviously fail to see when something’s bad for you.
    There’s no reasoning with fools like you, EG. I take my leave of this place. You apparently don’t like it when someone knows more than you. My boyfriend ans I didn’t spend years rading about psychiatric drugs, politics, the FDA and safer , more acceptable remedies. Just because the FDA says it’s safe, doesn’t mean it is. But what do I know? Your cousin works with SSRI’s, and the place they work for is either a pharm company, or is paid off by one. They can’t POSSIBLY be biased, can they? *snort* Dig your own damn grave. But don’t come crying to people who gave you better info when you fuck yourself up taking the garbage your doctors throw at you. All you’ll get is “I told you so.”

  6. Posted January 28, 2007 at 10:44 pm | Permalink

    Tokaia, stop projecting. Seriously. People who argue like creationist trolls on Pharyngula are the last people who should use phrases like “There’s no arguing with you.” Go troll Retrospectacle and tell Shelley that her research into hearing loss is just a front for government atrocities. It won’t be any more rational, but it’ll be funnier.
    And Sharon, the “history proves otherwise” point just underscores the fact that you tend to remember what medical science got wrong. In the past it got a lot of things wrong, and many more things right. Unless you know something about the specific facts of the case, which you apparently don’t, you’re obliged to trust the system that works more often than it doesn’t – at least, you are if you want to be rational.

  7. tankerton
    Posted January 28, 2007 at 11:09 pm | Permalink

    You really need to stop being so hateful! It certainly doesn’t help your arguments and EG doesn’t deserve that kind of disrespect. It is possible to disagree and even argue with someone with out being hateful. Personally, I have done a lot of research into mood altering medication as well as alternative therapies, such as fish oil. yoga, and counsling. I know where you are coming from and perhaps when you are more calm you can make a more reasonable arguement with compelling examples. I also know where EG is coming from and her ideas and experiences are also valid. People are unique. Likewise, so are their medical problems and treatments. That is why its important for people to take control over their own health, as well as over the health of their dependents and not to neglect their personal experience or just accept blindly the word of the first person that they come in contact with, be it you or an MD.
    And by the way, certain anti-depressants truely do work for certain people.

  8. EG
    Posted January 28, 2007 at 11:22 pm | Permalink

    “Sheeple,” “fools,” “you don’t know what the hell you’re talking about.” Gee, Tokaia, I can’t imagine why I don’t take you as seriously as I take people who devote their lives to studying how the brain works.
    Your thinking is a closed system: anyone who studies science and medicine has somehow been brainwashed by pharmaceuticals and is therefore unreliable. You completely reject the idea of expertise because it is expertise. Anyone with expertise is therefore made inherently untrustworthy, and those of us who respect the lifelong work of doctors, psychiatrists, social workers, and PhD researchers in neurology, biology, and psychology are somehow “sheep.” You think that your amateur reading (and on the face of it, I’m not convinced you’d know how to assess a source’s reliability if you had a secret decoder ring) makes you more trustworthy because it’s amateur, and you mock me for putting more stock in the work of my cousin, the PhD in neurobiology.
    And instead of providing actual arguments, or citations, or thoughtful assessments of ill people’s situations, options, and the consequences of their choices, you resort to name-calling and general insult. And then you wonder why your opponent is unmoved.
    I recall that when we disagreed on another topic, you announced that I secretly “knew” you were right. You seem to have a very low tolerance for anyone disagreeing with you–or even believing that it’s possible to be intelligent, well-informed, and even so to disagree with you. In that case, you’re probably right that this board is not the place for you.

  9. EG
    Posted January 28, 2007 at 11:25 pm | Permalink

    tankerton, thanks for the voice of reason–certainly I’m not opposed to people researching a variety of treatments (I myself have found L-Lysine to be helpful for certain things)!

  10. Tokaia
    Posted January 28, 2007 at 11:46 pm | Permalink

    It seems a few people here could use a dose of reality. I have a blog. It’s controvercial, and you’re likely not to agree with it. But maybe it’ll make at least someone think on their own, as opposed to being told what to think.

  11. Posted January 29, 2007 at 12:11 am | Permalink

    Just because someone doesn’t agree with you doesn’t mean that you’re automatically the only one thinking for herself. We’re all told what to think, to a certain extent, and even people who consider themselves rebels and free-thinkers can become “sheeple”.
    It’s a little insulting to suggest that EG and others don’t have a dose of reality just because they choose to base their opinions on other things than you have. It’s also wise to look at all sources of information with a skeptical eye.

  12. Posted January 29, 2007 at 12:30 am | Permalink

    But maybe it’ll make at least someone think on their own, as opposed to being told what to think.
    Shorter Tokaia: up is down, white is black, and anti-science obscurantism is thinking on one’s own.

  13. Sylke
    Posted January 29, 2007 at 1:27 am | Permalink

    Yes, let’s all think for ourselves and not be sheeple…and do and think exactly what Tokaia says.
    Get a grip, Tokaia. For real. Who the hell do you think you are, George Bush?
    Don’t let the door hit ya.
    I was going to chime in on the “Ashley Treatment,” but The Law Fairy succinctly said everything I was going to say.
    One thing I will add to the conversation is the concept of treating the family with the special-needs child as a whole unit instead of singling out the child by herself. It isn’t very realistic to treat her like she’s going through this process by herself, or that her family isn’t profoundly affected and involved. I see it as a symbiotic relatioship: Ashley gets the care she needs in the way she is most accustomed to, and her family is best equiped to give it to her. I think it’s safe to assume she would choose the most comfortable method of care she can receive by the people she knows, if she were able to express her choice.

  14. Posted January 29, 2007 at 7:27 pm | Permalink

    I said: Ashley is a little girl in this that should not be forgotton, but what is most important is the bigger picture.
    To which Alon Levy responded: In other words, what matters isn’t what’s good for Ashley but what’s good for your political ideology.
    No, what I am saying is what is done is done to Ashley. I don’t see any different outcome for Ashley if we condemn or embrace her parents and their choice.
    Instead what is important is why and how did this happen and how can it be prevented from happening again. Exactly where did the system fail these parents so that this seemed to them to be the best choice for their daughter? Where did the system fail Ashley? Where are the holes in the dike and how do we close them?

  15. Perkyshai
    Posted February 2, 2007 at 5:57 pm | Permalink

    “If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity.”
    From the “Ashley Treatment” website, a quote from one of the bioethicists that backed their decision. I understand the dilemma of being responsible caregivers for a person in Ashley’s situation, having experienced something very similar in a close relative. However…that is a terrifying statement to me, particularly coming from an ethicist. Questioning a human being’s right to dignity is akin to questioning that person’s designation of personhood at all. If she’s a person, then it matters. Period.

  16. Posted February 15, 2007 at 5:20 am | Permalink

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  17. susanb
    Posted June 26, 2009 at 6:56 pm | Permalink

    laura is such an awesome person. I wish i had the will power that she has. What an honor to know somebody like this. colon cancer

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