I started crying just a few paragraphs into this. These days it seems like there's so little hope in the world, and then you read about people like Dr. Levonson and it restores just a little bit of faith in humanity. Thank you for publishing this.
If someone decides not to have a condition treated/cured, that is certainly their right, but don’t block research or treatment that might cure me or another!
I suffer from an autoimmune disorder. It is not currently curable. I do my utmost to lead a complete life in spite of it, but the reality is I rely on the graciousness of the people who care about me to make it through bad flare ups. I am a burden to those people during those times especially. I struggle with that fact immensely. To say nothing of the fact that the flare ups are miserable and debilitating. There is nothing empowering or noble about any of it.
The idea that it would be somehow just to continue to impose that burden if an effective cure were available, that it would somehow be an erasure of my personhood not to celebrate and enable my condition, is staggeringly inane, detached, and selfish. The popular political zeitgeist of the day does far too much to sanctify and lionize suffering, and precious little to ameliorate it.
If you make your problem your identity, you will rage when people give you advice on how to fix it because it doesn't feel like they're attacking the problem, it feels like they're attacking you.
Let's admit that when you cure someone of a disability, you're making any community that has grown up around that disability poorer - those who can't or won't get cured are a little worse off because their group is one person smaller. And the cured individual himself is cut off from his former community and can no longer access the supports that had made his life possible with the disability, leading to a likely significant process of re-learning the aspects of life that depend on having the new ability - an ability he'll likely be disadvantaged at due to inexperience or lingering deficits.
All this said, it's obvious to anyone not blinded by wokeness that the investment required to get up to speed with an acquired or restored ability is repaid many times by the daily pleasure of living as we evolved to, with the full range of human capabilities, knowing that one isn't creating an unnecessary burden on family and friends.
I went into glasses very young. Before I was a teen, my uncorrected vision was 20/400, which if uncorrectable, is legally blind. Fortunately for me, glasses or contact lenses worked. However, every time I removed them, I had a taste of what it was to be blind. Perhaps congenital blindness is a different experience, but for a sighted person to go blind is a very frightening experience. Imagine waking up in a hotel room and the moment of disorientation trying to figure out where you are because you can’t see it. Imagine going into the ocean as a kid to play in the surf, and not being able to find your parents when you come out. Imagine having to move the bottles to within 4” of your face to tell which is shampoo or conditioner. My husband didn’t understand until he opened the shower and saw me shaving my legs with my eyes closed because I didn’t want to get soap in them, and I couldn’t see my ankles anyway. I got LASIK surgery at 35, and wept the first morning after - it was the first time I’d ever seen my alarm clock when it went off, while it was sitting on the bedside table. Ableism my 🫏.
As a retired SLP, I am well-aware of the controversy surrounding Deaf culture (which has raged for over 40 years). What I don't understand (referring to the whole article and "ableism") is when/how we became so black/white in our thinking. It seems to me (and I know this has been said before) that the "tolerant" have now become completely intolerant! Since when is who we are about only one thing? When did we stop allowing people to decide what was best for them, given a myriad of factors such as personality, financial, cognitive ability etc.? For years, people have objected to labels such as "learning disabled" or "hearing impaired", but now it is OK to label everyone as "ableist" or "racist"? At least the label of "learning disabled" served a purpose in that it could open doors and provide services. What purpose does the label "ableist" serve?
I lost all hearing in my left ear, and half of it in my right, by the age of eight (a side-effect of an antibiotic given, ironically, for ear infections). When my mother sent a letter to my school asking if I could be seated at the front of the class in order to hear, she mentioned I was learning to lip read. The headmaster interrupted a class to ridicule what he saw as parental overreach, and had me try to read his lips through the glass window in the classroom door. Humiliating. I love music, but I can;t hear stereo, having no directional hearing. In later life I invented various electronic and acoustic stethoscopes to make it easier for me to examine patients. The idea that I would prefer to stay like this is ridiculous, and is simply sour grapes from those angry at having, like me, no choice about it.
If you are an adult and want to stay deaf, blind, or otherwise disabled, have at it. But don't tell others that they need to do so too when there is a possibility of a cure.
I have minor trichotillomania. Should that be celebrated?! (No. I hate it.) Sheesh, this is crazy! What next? Ought we to celebrate and not try to “cure” depression? What about eating disorders, which can have their own cultures?!
I started crying just a few paragraphs into this. These days it seems like there's so little hope in the world, and then you read about people like Dr. Levonson and it restores just a little bit of faith in humanity. Thank you for publishing this.
If someone decides not to have a condition treated/cured, that is certainly their right, but don’t block research or treatment that might cure me or another!
I suffer from an autoimmune disorder. It is not currently curable. I do my utmost to lead a complete life in spite of it, but the reality is I rely on the graciousness of the people who care about me to make it through bad flare ups. I am a burden to those people during those times especially. I struggle with that fact immensely. To say nothing of the fact that the flare ups are miserable and debilitating. There is nothing empowering or noble about any of it.
The idea that it would be somehow just to continue to impose that burden if an effective cure were available, that it would somehow be an erasure of my personhood not to celebrate and enable my condition, is staggeringly inane, detached, and selfish. The popular political zeitgeist of the day does far too much to sanctify and lionize suffering, and precious little to ameliorate it.
Reminds me of a Tweet I saw recently
If you make your problem your identity, you will rage when people give you advice on how to fix it because it doesn't feel like they're attacking the problem, it feels like they're attacking you.
Let's admit that when you cure someone of a disability, you're making any community that has grown up around that disability poorer - those who can't or won't get cured are a little worse off because their group is one person smaller. And the cured individual himself is cut off from his former community and can no longer access the supports that had made his life possible with the disability, leading to a likely significant process of re-learning the aspects of life that depend on having the new ability - an ability he'll likely be disadvantaged at due to inexperience or lingering deficits.
All this said, it's obvious to anyone not blinded by wokeness that the investment required to get up to speed with an acquired or restored ability is repaid many times by the daily pleasure of living as we evolved to, with the full range of human capabilities, knowing that one isn't creating an unnecessary burden on family and friends.
I went into glasses very young. Before I was a teen, my uncorrected vision was 20/400, which if uncorrectable, is legally blind. Fortunately for me, glasses or contact lenses worked. However, every time I removed them, I had a taste of what it was to be blind. Perhaps congenital blindness is a different experience, but for a sighted person to go blind is a very frightening experience. Imagine waking up in a hotel room and the moment of disorientation trying to figure out where you are because you can’t see it. Imagine going into the ocean as a kid to play in the surf, and not being able to find your parents when you come out. Imagine having to move the bottles to within 4” of your face to tell which is shampoo or conditioner. My husband didn’t understand until he opened the shower and saw me shaving my legs with my eyes closed because I didn’t want to get soap in them, and I couldn’t see my ankles anyway. I got LASIK surgery at 35, and wept the first morning after - it was the first time I’d ever seen my alarm clock when it went off, while it was sitting on the bedside table. Ableism my 🫏.
Very bizarre article/title but appropriately weird for this period of time.
"“could be interpreted as perpetuating ableist beliefs that disabled people are flawed and need to be ‘fixed.’ ”"
of course they are disabled. That's literally what it means. They are not ABLE to do things that a person with a properly functioning body can do.
And if you've never been able to hear a symphony, of see a sunrise then you really aren't capable of understanding just how much you are missing out.
So should they not be offered the choice to do such things if medicine can make it so? I can’t tell if you support treatment or not.
I definitely support treatment. And I would argue that not giving your child the gift of hearing borders on child abuse
Thank you for clarification. And, agreed.
Shame article can’t be listened to - @thefp
As a retired SLP, I am well-aware of the controversy surrounding Deaf culture (which has raged for over 40 years). What I don't understand (referring to the whole article and "ableism") is when/how we became so black/white in our thinking. It seems to me (and I know this has been said before) that the "tolerant" have now become completely intolerant! Since when is who we are about only one thing? When did we stop allowing people to decide what was best for them, given a myriad of factors such as personality, financial, cognitive ability etc.? For years, people have objected to labels such as "learning disabled" or "hearing impaired", but now it is OK to label everyone as "ableist" or "racist"? At least the label of "learning disabled" served a purpose in that it could open doors and provide services. What purpose does the label "ableist" serve?
I lost all hearing in my left ear, and half of it in my right, by the age of eight (a side-effect of an antibiotic given, ironically, for ear infections). When my mother sent a letter to my school asking if I could be seated at the front of the class in order to hear, she mentioned I was learning to lip read. The headmaster interrupted a class to ridicule what he saw as parental overreach, and had me try to read his lips through the glass window in the classroom door. Humiliating. I love music, but I can;t hear stereo, having no directional hearing. In later life I invented various electronic and acoustic stethoscopes to make it easier for me to examine patients. The idea that I would prefer to stay like this is ridiculous, and is simply sour grapes from those angry at having, like me, no choice about it.
I hope people submit a ton of comments on that NIH request for feedback.
And, also send an email to your congressional reps
My wife is Deaf and we have two kids, both who hear. We would be fine if they were Deaf, but not selecting for it.
Cochlears work better if you lost your hearing rather than being born deaf, because then you have the memory of sound.
We know a few pretty militant Deaf Pride people. She has some pride, and it is it's own culture that they let me be on the fringes of.
Multiple social contagions, developed by Wokies, have escaped the labs (college campuses) and pandemics are spreading across the world.
If you are an adult and want to stay deaf, blind, or otherwise disabled, have at it. But don't tell others that they need to do so too when there is a possibility of a cure.
I have minor trichotillomania. Should that be celebrated?! (No. I hate it.) Sheesh, this is crazy! What next? Ought we to celebrate and not try to “cure” depression? What about eating disorders, which can have their own cultures?!