Actually, the title is a wee bit misleading. I’m not actually here to talk about cochlear implants. Honestly, I don’t know enough about them to make a properly informed blog post. Instead, I’m here to talk about my recently learning about the cochlear implant controversy, and the fact that I found there to be a striking number of parallels between that controversy, and things the autism community is dealing or fearing for the future.
First of all, I can’t really give you an in-depth look at the controversy itself. The best I can do is a vague overview. I started here and will be drawing heavily from this link for this post. I highly recommend that you read it yourself – it’s basically talking about the cochlear implant mess from the perspective of a deaf person. I first heard of this controversy when Nee told me about hearing something on slashdot. What he heard there was that there are claims that cochlear implants are “destroying the deaf community.” There was little else, but it did immediately make me think of the fears of an autism cure in the autism community. So I decided to look into it. What I found was disturbing.
There is fear mongering and ableism. “We have doctors telling new parents who just gave birth to a deaf baby that their baby is doomed–that she will never have a job, lead a normal life, etc. Despite the fact that 95% of deaf people often prove those doctors wrong on a regular basis everyday.”
There is the inspiration porn – all the videos depicting deafness as something tragic and life-destroying, but with a cochlear implant (or CI for short) this poor, broken person got to hear for the first time! How inspiring! *retch*
There’s the ignorance – people advocating for CIs without really understanding what’s involved, what the risks are, what the drawbacks are.
Worth mentioning – apparently none of these issues are making it into the discussions on CIs. Anyway, let’s talk about that last one for a bit. Again, I was certainly quite ignorant. It just wasn’t something I had thought about much. But then the article directed me here and I read the lengthy list of risks and drawbacks and WOW that’s sure never talked about in the inspiration porn videos. One that jumped out at me was MRIs – if you get an CI, no more MRIs for you ever, unless you get it surgically removed. Can you imagine? A central diagnostic procedure is just off the table for life.
Another one that jumped out at me was this one:
“An implant may
- set off theft detection systems
- set off metal detectors or other security systems
- be affected by cellular phone users or other radio transmitters
- have to be turned off during take offs and landings in aircraft
- interact in unpredictable ways with other computer systems”
These are not small, easily mitigated risks! They are HUGE negative impacts on a person’s life! Nor are they temporary – these were described as “lifestyle changes” in the list of risks.
Yet despite all the risks and all the drawbacks, people push this “cure” on people who are deaf or hard of hearing, regardless of their actual need. It is treated like some kind of magical panacea, but it is not. It is not a cure – it is unlikely to allow a deaf person to hear the same as a hearing person. It takes a year or more to fully learn to use. It has different degrees of effectiveness on different people. It might not work at all, and in rare cases the attempt can actually destroy what little hearing a person had. It it is quite likely the right answer for some subset of the deaf population, but it is being pushed on EVERYONE, regardless of if it is the right answer for them or not.
The big thing, though, is that the deaf community is facing, RIGHT NOW, what we in the autism community fear happening in the future. The parallels are evident and unavoidable. Honestly, I think we should find a way to get involved. Let’s not say “it’s not us, so it’s not our problem.” Let’s not sit back and let a population of ableist, inspiration-porning people think that it’s ok to shove people towards massive life-changing decisions that may or may not be the best choice for them. Let’s not just turn our backs on another group whose difference is condescendingly treated as some kind of tragic disability by the population at large. Let’s not just sit by and allow a dangerous precedent to be set by fear-mongering doctors and well-meaning but ignorant friends and family members. Right this minute I don’t actually know what we can do, but at the very least we can make some noise. This is me, standing up and saying “this is not ok.”