My Challenge with the Ice Bucket Challenge

I’ve been trying to figure out why every time I see yet another person do the ice bucket challenge, it feels like I’ve had the cold water thrown in my own face. Why it bothers me so much. Why I want to shut down social media all around me.

One thing that I am clear on is that I do not have a problem with the ALS Association, or with people donating money to it. The money will no doubt be put to good use, and those involved with the association appear to be thrilled that people are learning that amyotrophic lateral sclerosis exists (even if that’s all they are learning). I’ve read about, and watched a video featuring, Pete Frates, the gentleman with ALS who is credited for starting the ALS focused ice bucket challenge effort when he challenged his friends. I appreciated having the chance to hear about his experience and story. I am glad that he brought awareness to ALS because, like so many other diseases, conditions, and significant disabilities, very little is known or understood about them.

No, my problem is not with the goal at all. I’ve realized that my problem is with what it seems to take to get people to care, particularly those without any disability experience. It’s the idea that people have to be “challenged” to care. That disabilities or health conditions, in this case ALS, have to be made into a game and that you have to see that you will have fun with it first, before you’ll even consider speaking of it or donating money to help people living with it. Having a disability or significant health condition is just not cool, sexy, worthy, or valid enough on its own. We have set it up so that disability will only get attention and consideration if it first gets the non-disabled stamp of approval, based on non-disabled standards of what’s acceptable and worthy of consideration. By encouraging this act of filming and posting the dumping of ice over one’s self, we are inherently allowing non-disabled individuals to exercise their privilege and their freedom to care and consider in a manner that, and only for as long as, is comfortable to them.

You may be thinking, “but ALS is degenerative,” and wonder how I could possibly fault anyone for wanting to eliminate this horrible disease that causes such suffering. I know that Pete Frates himself encouraged this particular challenge, and I have also seen some other people with ALS experience excited by it. This does not surprise me. Contrary to what many may believe, though, not all people who live with disability in their life feel and think the same way. Let me be clear on that: We are not all the same. The disability experience is not universal. To have heard one disabled person’s opinion is not to suddenly know the opinions of all disabled people. If you want to say you are doing the ice bucket challenge for Pete Frates, based on his wishes, then please do. I just ask that you stop and realize that not everyone with disabilities or degenerative conditions, or even ALS, will want or appreciate that. While it is true that ALS is a significant, degenerative health condition; making the leap to assume that all people with ALS must be “suffering” is indeed a huge leap, especially if you don’t know any of them yourself. I think about Stephen Hawking, the successful scientist who has been living with ALS for decades now. He may be suffering too, but I am not going to assume that. I think it would even be a leap to assume that Pete Frates is suffering. In his video, he and his mother talked about the actions they took to get legislators and others in positions of power to consider allocating funds to treatment and research for this medical condition. They were focused on encouraging structural change and impact. Yet I am not hearing that in any of the ice bucket videos that I’m seeing, as we become more and more removed from the original motivation for this “challenge”.

As this latest fad gains more speed and fans, I find myself wondering if what the supporters, specifically those with ALS experience, are doing is what I’ve had to do so many times in my life– be grateful for whatever crumbs of care and attention one can get, no matter how it is delivered. I have spent the better part of my life having to smile and appear grateful for any shred of understanding or acceptance I could get. Whether it was for school or work accommodations for my hearing disability, or for social acceptance as someone with Treacher Collins Syndrome, I often had to do whatever it took to make the non-disabled educator, supervisor, doctor, and peer feel comfortable with me first, in order to get what I needed second. By making you laugh, by downplaying or hiding my disability, by showing you how I’m “just like everyone else”, and how cool, productive, and valuable I am or can be, despite my disability, all the while keeping the dirty little secret that I am actually who I am because of my disability. So often people with disabilities are forced to prove their need, and do whatever it takes to get the nondisabled in positions of power to deem them worthy enough to receive accommodations, services, access, funds…consideration…humanity.

For me, the irony of the ice bucket challenge is that, for once, “my” people are not the ones on display– the ones whom others are staring and laughing in mockery at. For once, I am the one looking away in distaste from you. So shouldn’t that make me happy? Sadly, it doesn’t. Because I realized that you probably don’t see that it still gets to be your choice to be a spectacle. You’re privileged in that you can choose to accept the challenge, dump the ice, and be filmed doing it. I fear that most people accepting this challenge are not first getting to know someone with ALS, or another significant disability or health condition, directly. I worry they are not understanding that people with obvious disabilities and physical differences will never have the luxury of being able to choose when to be stared at or laughed at. I read a piece by a woman, who is not a fan of this ice bucket challenge, whose father had ALS and used a wheelchair before he passed away. She said her dad stopped leaving his house long before he really had to, because he couldn’t bear having people stare at him with sad, scared faces, or shield their children from looking at him. They were looking away from him, just as I find myself wanting to look away from your ice-covered bodies.

That’s why I feel so disheartened every time that I see someone else, especially those whom I care about and respect, put out a video of dumping ice on themselves or someone else, laughing, and then challenging three more people to perpetuate this attempt to cure, or at the least, to not ever end up like, the people whom it is supposedly all for. It’s another cold reminder to me how little understanding there is for what it is like to be surrounded by this ableist privilege and ignorance that is, all the while, shrouded in good intentions and acts of charity.   I find myself asking why disability-related charities are always based on eliminating disability, rather than on understanding and being inclusive of it as another aspect of our diversity? Why are there no fund raising attempts to make our built environment more physically accessible to people living with ALS and other disabilities? Why are no funds put towards educating our society about disability history, the disability rights movement, and ableism? Why is there no massive social campaign geared toward non-disabled people becoming allies to eradicate disability oppression and stigma? Why not put the effort into helping our children to look directly at that father with ALS to hear and learn about him and his story?   But there are no ice bucket challenges for nondisabled people to examine and change their OWN attitudes and behaviors toward disability–just to change the likelihood of disability intruding on their life and making them uncomfortable for more than the 5 minutes they are wet.

I will close by reiterating what I said at the start. I very much support raising awareness about ALS, and have no problem with donating to the ALS Association. I know that there is good intent behind everyone’s choice to do this. However, I realized that remaining silent about the negative implications that I see from the accompanying public ice bucket antics would be another way of ignoring and perpetuating disability oppression and ableism. I cannot contribute to the very problem I am naming. This inescapable, unavoidable phenomenon going on all around me has made me realize that I need to give myself permission to stop smiling and nodding in gratitude for whatever bit of seemingly positive attention we get. I can no longer take the “At least they mean well,” or the “I guess some attention is better than no attention” attitude. No. If I expect others to question their attitudes and behaviors, along with the motivation and intent behind them, then I need to take ownership of my feelings and actions as well. I need to push myself to finally give voice to my disability experience. That is one challenge I will accept.