MrBeast’s act of kindness exposed one of the big debates roiling the medical profession: should disabilities be fixed—or celebrated?
re: cochlear implants. Funny you should say that. Thirty years ago my wife and I discovered that the light of our life, one-year-old David, was deaf. I remember discussing it with an older surgeon at the hospital where I worked. He laid it on the line: A deaf child is more handicapped than a blind one because it cripples his ability to learn. Research confirmed it: a deaf child would typically grow up to have a third-grade education and work in a laundry - something confirmed by memories of my neighbor at the trailer park where I lived when I was in medical school. He was deaf, about forty years old, and except for a combination of odd sounds and hand gestures was completely nonverbal - and worked in a laundry.
Hearing aids were of no benefit to our son. My wife and I began the arduous process of learning American Sign Language - and we struggled. It was totally inadequate to convey the ideas and concepts that are so beautifully expressed by the English language; for example there is no way of saying, "It looks like you have picked up a little weight." The ASL expression is, "You're fat."
But during those classes, the instructor mentioned that she knew a family 'way back in the booger-woods of West Virginia who had a deaf daughter with this thing called a "cochlear implant." Out of desperation I looked up their phone number. It was truly a bolt from the blue. Her mother was an absolute ball-o-fire, a local schoolteacher and Tiger Mom of the first order. A quick hop later, our son in tow, we talked with this family about this "CI" device. Thirty years later, I remember it vividly: Mom yelling up the stairs, "Rishona!" And from upstairs came the response: "What?" "Come down here." "OK." My God; those words still make me choke up. Mom's parting words were: "A cochlear implant will change your child from a deaf child to a hearing one."
Ableism. The Internet was just coming of age, and I had joined a newsgroup (remember those?) called, "Beyond Hearing," searching for anything - anywhere - to help me help my son. I thought everyone on the group would be delighted with my discovery, but I was met with complete, unbridled hostility, culminating with the comment from the newsgroup owner that "Deafness is not a disability; our members commonly intermarry, hoping to CREATE A DEAF CHILD. You just want to destroy the deaf culture."
I lost my mind. I replied, "Did you just say that you wanted to create a disabled child?"
And yes, I want to destroy the deaf culture. And the blind culture. And the cancer culture. And the childhood heart disease culture. All of it. And if you don't think deafness is a disability, I'll send you my address. We can meet and stand in the center of the Interstate with our backs to traffic. By God, we'll see who is disabled."
As I said, that was thirty years ago. David had his surgery, learned to talk, went to regular school, and graduated college. As for this abelist nonsense; starting that stuff with me is a very low-return enterprise. I've been to Canaan and I have no patience with such.
Oh, please. If certain people choose to remain blind or deaf (or Deaf), that’s their choice, and it should be respected.
But don’t ever, ever decide you have the right to impose your choice on others who share your condition — others who might want a life that offers a wider range of experiences, and who have no desire to be boxed in by heedless zealots.
As someone who became severely physically disabled after a rare brain disease at age 24, I would say that
1) disability is an enormous burden,
2) ableism does exist (but it’s not ableist to help others), and
3) it is possible to be both accepting of and helpful to disabled individuals.
In my case, there is no “cure” for my brain injury, and I am truly grateful in spite of my suffering, but I also don’t want anyone minimizing my pain and difficulties (and excusing themselves from helping me) by saying my disabilities should be cEleBrAtEd. 🙄
I had cataract surgery when I was 40. The surgeon said that he normally tells people that they end up with eye sight of a healthy 65 year old. My reply was that I'd rather have that than what I currently had.
It is life-changing and life enhancing. The colours. The individual leaves. Being able to watch raindrops fall or snowflakes. Magical.
Without it, I would have blind and unable to drive, unable to read, hugely dependant on other people. The quality of my life has been tremendously improved by this simple operation.
One of my eyes is set long, the other eye set to reading. My brain figures it out. I don't have to wear glasses except for driving as I like binocular vision for that.
Other people might make other choices but I have no regrets and would make the same choice again.
It is wrong to deny people that choice. The gift of sight is something I am and remain profoundly grateful to modern medicine for.
What Levenson is doing is tremendous and I hope he helps many more people.
People can choose to live how they want to live, disability or not. However, I strongly suspect that when any of the misguided people asserting "ablism" (what a stupid, ignorant term) against Dr Levinson and MrBeast begin to go blind from a curable disease/condition, they'll anxiously reach out to experts who can relieve them of their "disability". David Williams, Ophthalmologist and Retina Surgeon
Seems to me they are speaking out of both sides of their mouth. If it’s ableist to cure blindness or deafness isn’t it ableist to enable someone to change their gender via surgery or medicine? Shouldn’t they just have to learn to accept the body they were born in?
I live less than an hour from the NIH and their Children's Inn. My grandmother volunteered there for years. Families come from all over the world with rare and debilitating conditions and diseases. They come to the NIH to participate in studies and to explore treatment options. These poor kids are in many cases very uncomfortable and in need to serious help, that they can only get from a specialized team they are not living 'normal' lives in many cases. It should be the mission of NIH to treat and cure them of their disabilities. Furthermore, my niece has a cochlear implant. She's 11. She was born totally deaf because my sister contracted a dangerous virus while pregnant. My niece has been able to go to public school and enjoy music and lead a totally normal life and she can hear 'like everyone else.' I don't see how this is a bad thing. I think there is a difference perhaps in physical vs. Mental disabilities and maybe that's the nuance. I love that the world is beginning to embrace neurodiversity and people with Downs Syndrome, and recognizing how much independence can be achieved even with these limitations. I think this 'ableism' argument like everything else is going a bridge too far now.
let me help, at this point in time certain elements of society need to be told to EAT SH$&.
I am a disabled therapist. There are a few clients who throw out the word “abelism” as they willing jump in the hole of judgement and self marginalization. I am certain they don’t even see my obvious disability as I offer to pull them back up with 1 hand. It is very difficult being disabled. But I still think it’s easier than going through the lengthy, expensive obstacle course of a prosthetic. And this is only true for me. I know people who have prosthetics and thrive with them. I think “abelism” is fodder for internet junkies. I will accept help and live a rather happy autonomous life in real time.
My reply to NIH:
To the extent the mission statement reduces emphasis on and effort toward finding and implementing curative therapies for any human suffering or physical inconvenience, such a change is counterproductive and misstates what should be the fundamental mission of all medicine - to end or mitigate human biologic component failures. The notion of "ableism" where the concern is that somehow curing ills and disabilities is harmful to the community of the disabled is ridiculous. First and foremost, the disabled are themselves possessed of agency and can seek or refuse treatment. I add that I believe it is evil to suggest withholding treatment for any malady for which there is therapy available and for which the afflicted wish a cure.
The NIH specifically should reject "ableism" because it implies that available care be withheld because a population of most likely healthy people think they know best what is needed for the afflicted.
Good for MrBeast and Dr. Levenson. If someone didn't want the surgery were they forced to accept it?
I think not.
Now that we have access to a huge population of opinions via the Internet, it's interesting to hear that there are some blind or deaf folks who wouldn't take "the cure".
Apparently there's some who take insult on their behalf when a surgical fix to the issue is celebrated.
I won't try to convince those people to think otherwise. I "see" their point.
One question though:
How many of them have intentionally blinded themselves in solidarity?
I’ve worn glasses since I was eight because my eyesight is awful. If I sit in the back of a movie theater and take off my glasses, I can’t tell the actors have facial features, even in close-ups. LASIK isn’t an option for me because my corneas are too thin.
When my then-three-year-old needed glasses, I didn’t go weep in a corner, but I wasn’t happy she was “like me,” either. Even if an individual person leads a happy life being blind or deaf, it inarguably makes life more difficult. Why would you ever want that for your kid?!
No matter how ridiculous the rhetoric so called “advocates” perpetuate, we should all be wary of the very real consequences it has. I underwent reconstructive surgery on both of my feet at the age of 18, my insurance company repeatedly refused to pay for it; claiming my condition was suddenly not a disability (dispute it causing chronic pain and limiting my mobility throughout my childhood). Such a claim was only made possible by activists claiming disabilities should not be cured when possible.
I thankfully was able to fight the insurance company and get my surgery covered, but the experience was deeply frightening and humiliating.
Always remember who such activism is benefiting. It’s not disabled people, it’s the insurance companies who now feel empowered to keep us suffering and removed from society under the guise of “inclusivity” while they limit their costs.
More Leftist tactics of "divide and conquer"! For Leftism to prosper it HAS to increase the number of "groups/peoples who have a special ax to grind, and then set them to attacking everyone else.
Let the blind remain blind, let the deaf remain deaf! Just do not ask me to accommodate them if their medical state is treatable.
And for the record, I am functionally deaf, but expensive hearing aids allow me to function.
>Some of the people Levenson treated are full of praise for their experience.
Interesting wording. Just "some" of the people are full of praise? I would be willing to bet nearly *all* of the people are full of praise. The only exceptions might be those for whom the surgery had complications or those for whom it just didn't work for whatever reason.
I just had cataract surgery, and let me assure everyone, it's an effing miracle. I assumed the surgery would be 15 hours and require specialists flown in from Houston and Geneva. Instead, the operation took less than 15 minutes, and my sight was fully restored almost instantly.
If you want to be blind, go right ahead and be blind. If you think having severely compromised vision contributes to a full, vibrant life, good for you and best of luck.
But don't denounce people who, out of the goodness of their heart, give people back their sight.