If all you have is a CURE, people with epilepsy become...

[bryan farley]

There is a quote by Bernard Baruch that I have been contemplating lately.

 

"If all you have is a hammer, everything looks like a nail."

 

I have been thinking about the quote for several reasons. For one, I often feel as if I do not have enough tools to express myself effectively. Decades of shame have taught me how to be silent and how to be outraged, but not how to express my frustration with caring people.  I want to learn how to use a velvet monkey wrench.

 

The quote also illustrates how some health organizations approach epilepsy advocacy. It seems that some people only have one blunt tool; epilepsy must be CURED. Many of these advocates do not have epilepsy, yet they hammer away for a CURE. Whenever they finish hammering, I am often left feeling a little more bent and rusty than when they started.

 

If all you have is THE CURE, people with epilepsy become the nail.

 

I do not want to be CURED. There was a time when I wanted nothing else, but not now. Do I want better health care, research and medication? Of course, but I do not need a CURE. If people with epilepsy wanted a cure, I would support them. If those of us with epilepsy wanted to improve the lives of families affected by epilepsy, I would hope that those with institutional power would support us. We must lead the fight for a CURE if there is to be one. When others lead it, we appear weak. We appear too weak to ask for a cure.  

 

Though I want parents to feel supported and heard, I do not want them leading or "spearheading" our movement. I don't want a group of people without epilepsy defining the goals of my community, nor do I want them being identified as the spokespeople for our community. Often people with epilepsy are described as quiet when in truth, people without epilepsy are just too loud. I also do not want a quasi-partisan political organization leading our advocacy efforts; it becomes awkward for everyone. 

 

I want journalists to start acting like journalists. I am a journalism educator, so my warning comes with some sadness. People with epilepsy have been used. When epilepsy advocates do not always have access to the White House, journalists will stop using people with epilepsy to gain access to political and business leaders. While I have appreciated the recent publicity, people with epilepsy should be cautious.  Journalists have promoted the cure mythology at the cost of challenging political and business leaders about their treatment of people with epilepsy.  

 

Those of us with epilepsy must keep building. I realize it is much easier to destroy something than to build it, so I respect those people who have created organizations. People with epilepsy need support. Families need help. Of course, it is even more difficult to build bridges than it is to build isolated structures or bridges to nowhere. We must find a way to include the families, journalists, politicians, religious leaders, and business leaders.  If you know someone with a velvet monkey wrench, please let me know.

[bryan farley]

Joanna,

You are welcome. Hope you find my posts useful. I enjoy reading my posts again after others have posted. I am surprised what I have learned.

Yesterday, I attended part of The Epilepsy Therapy Project's 1st ETP Family Day is San Francisco. Our larger community seems to be building bridges, but we still have a long way to go. I was impressed to see that parents are supporting each other and those of us with epilepsy are finding our voice.

Glad you found us and we found you.

[Joanna W.]

Thank You for your post! You gave me a different perspective!

[bryan farley]

Thanks Terry for helping our fellow traveler.

 

bf

[TT]

Dear seizures and a daughter,

I'm not sure of the details of your case and I don't want to put your hopes up, but if epilepsy was a primary reason for the loss of custody of your daughter, then you might have a legal civil rights case and be able to appeal that decision.

If you wish, let me know the city and state where you are and I can look up a legal organization that might be able to hear your side and consider whether would support making an appeal for free, so that you would not have to pay for the lawyer or any costs to do this.

I cannot, cannot promise anything, but I would do the research for you.

Regards,

 

Terry Tracy

 

 

[bryan farley]

Dear "sezuires and a daughter,"

 

Regarding your comment, "I lost custody of my child. (T)hat (is) the most hurting part." I bet it is. And for you, I wish it were in my power to grant a cure.

 

I think about the word seizure and its many meanings often. One of those meanings is related to "taking away." Sometimes, those of us with epilepsy have our children taken away. I understand why this happens, but it does not mean that I like it or that I think it is fair.

 

One reason that I have said that I do not want a CURE is that I want people to understand more about what happens when people's children are taken away. I want us to find solutions NOW for your situation.

 

I also want to support the parents of children who have had their children taken away, because their children have died from epilepsy? Those parents lost something too. How can we help them?

 

You wrote that you would rather find a cure than win the lottery. I would too, but I do not encourage people to play the lottery. The odds are against winning, and even if one person wins, the underlying problems still exist.

Meanwhile, you are not with your kids. You miss your daughter and I know she misses you.

 

Thank you for commenting, and while I might not have helped you, you have helped me become more grateful that I should be able to hug my two children today when I pick them up from school.

 

 

[sezuires and a daughter]

I don't think we will become weak, I think we will understand more than understand others how hard certain things in life are for us. So I think we will be so happy about how much we can do without any hardship. it might too much. I will rather have a cure than hit the lotto right now. I want to be without sezuires. life is too sad and hard and unfair. I can't make lots of choices for myself. I can't get a 8 hour job. I lost custody of my child. that the most hurting part

[bryan farley]

Before I move on to a new blog post, I wanted to respond to the last comment. I also wanted to share of few other thoughts I have developed during this really good discussion.

 

First, regarding Christopher Reeve's decision to advocate for a cure. I argued that Christopher Reeve's actions were informed by his public image, and that he chose to advocate for a cure. I realize that I could be wrong, and "purplegrrloz" makes a great argument. Reeve could have merely been motivated by wanting his life returned to the way it had been before his accident. Either could be true. Both are interesting.

 

Besides being a classically trained actor, Reeve grew up around people who influenced others. As a kid, Reeve knew journalists, bankers, politicians, poets, educators, writer, and entertainers. Many of these people were famous; many were family or close family friends. Reeve learned at an early age how to present a message. I contend this background led him to choose to be a spokesperson for a cure, just as the bio on the Reeve website states, "Reeve frequently sought the challenge of parts that cast him against type." Reeve usually controlled which roles he took.

 

Of course, it is possible, that when Reeve was injured, he chose the most popular option or the easiest. Perhaps, Reeve forgot all he learned about presentation, messaging and audience. If so, this is also remarkable. Perhaps wanting a cure is basic and universal.

 

Returning to my original blog post that started this thread, I might have appeared to be against a cure. More accurately, I am frustrated that our movement has become "CURE centered." Moreover, our leading spokespeople are not people with epilepsy. With so many talented people with epilepsy, I hope this changes.

 

I am also not against our allies speaking. I want them to participate. I expect them to participate, but I want them to be careful about how they position themselves in our movement.  Sometimes our allies make it more difficult for some of us to speak.

 

Lastly, I have questioned the organization that calls itself CURE. For most of my life with epilepsy, I protected my family. By extension, I want to protect all parents of children with epilepsy, including CURE. Further complicating this relationship, I belong to the same political party as the CURE leaders. Do I remain quiet to protect the parents? Do I remain quiet to protect my party? If I were in a different party, would it be worse?

For now, my main concern is that when those without epilepsy argue for a cure, many of us find ourselves in a familiar position. We can confront our family and friends or we can live with awkward silence.

[maristrider]

Yes, Christopher Reeve was a very powerful spokesperson. But I think his advocacy priority (ie cure) was very much born from his personal want for a cure, rather than a conscious "how will my profile as Superman have greatest impact" decision. Suddenly acquiring a severe disability is difficult, to say the least. I don't know anyone who didn't want their old life back in the weeks/months immediately after an disabling accident or stroke (and I was a one of the leaders of a brain injury organisation for almost 15 years, so my sample size is pretty big!). Those arguing for civil rights/social model rather than cure tend to be people with more long-standing disabilities (there are exceptions, and there are certainly people with long-standing disabilities who want a cure!).

 

Some of the issues raised by people with disabilities who think civil rights/access/support should be the priority, rather than cure:

* It will take time (probably a lot) for any cure to be developed. People with disabilities need to live the best quality of life possible in the meantime. Focusing primarily on cure will divert money away from support services and access modifications (or whatever), and reduce time/effort on community education and social change (or whatever).
* A cure may not work for everyone (epilepsy is not one condition with one cause; in the case of spinal cord injury, a cure may only help recently injured people etc). A cure may even leave some people worse off

 

Re Christopher Reeve specifically, many people pointed out that his financial situation meant he was relatively protected from difficulties many other people with severe physical disability experience. He was going to have the equipment he needed (not be denied by insurance, not be on a waiting list for years); he was going to get the attendant care and home nursing he needed (not end up in a nursing home in a 4-person room shared with 3 80 year olds - true story), and so on.

 

Tangent (I'm good at them): if our epilepsy is cured, what then? Particularly for those of us who have had very frequent seizures for many, many years - since we were children, say.

[bryan farley]

@purplegrrloz,

 

Thanks for such a thoughtful and timely response. I had just been thinking about Christopher Reeve earlier the same day you posted your comment, so I am thrilled. 

 

When I first posted, I was concerned that the spokespeople for the epilepsy movement did not have epilepsy. I also found it problematic that our spokespeople did not have epilepsy. Christopher Reeve is an example of a person with a disability who advocated for a cure. Reeve used his voice. This basic act benefits our movement.

 

Reeve also chose to argue for a cure. Reeve was a smart man who understood how the world worked. He played Superman for three films. Then, he could not move. Advocating for a cure was probably more persuasive and more inspirational. If Reeve had been known for portraying a popular civil rights leader, Reeve might have argued for increased rights. 

 

I tend to believe that Reeve chose the direction that would be most powerful. However, I also believe that the cure vs. rights debate helps people with disabilities when the argument is conducted by people with disabilities. I understand why someone wants a cure. I also understand why someone wants a job or college education.

 

Last about Reeve, he might have been controversial for other reasons too. I believe he spoke at the 1996 Democratic National Convention. Democrats supported his issue, but I still think his appearance at a political party's national convention created some controversy. People with disabilities are from all parties and no parties. 

 

 

 

[maristrider]

As someone involved in the disability rights movement for many years, the "fight for cure vs fight for services/access/accommodations/acceptance" debate is so incredibly familiar to me. Christopher Reeve was an incredibly controversial figure amongst people with disabilities, because of his cure focus (here are extracts from several articles). In the autism 'community', there are constant, ugly arguments between neurodiversity advocates (mostly adults on the autism spectrum) and cure-focused ones (mostly parents of autistic children).

The "who should speak/represent" debate is also familiar. "Nothing About Us Without Us" is one of the most widely quoted sayings of the disability rights movement - mostly because people with disabilities are still too often left out (or included in a tokenistic way). On building bridges and including all stakeholders - have you seen Sally Clay's 1993 article Schlepping with the Enemy?

One last point, somewhat off on a tangent: a few months ago, there was a #weneedacurefor Twitter meme. Lots of people saying #weneedacurefor cancer, or AIDS. Lots of people saying #weneedacurefor autism. Quite a lot saying #weneedacurefor diabetes. And yes, lots of people saying #weneedacure for stupidity. Precisely 2 saying #weneedacurefor epilepsy (and one of those was Greg Grunberg's @talkaboutitorg). The general public really don't know how dangerous or disabling epilepsy can be. Regardless of what you think our advocacy priorities should be (ie cure or something else), I think that lack of awareness is a concern.