Blind Envy

An earlier draft of this confession had paragraphs of context to ensure that I don’t come across as antagonistic towards my fellow Blind comrades. But why is it my responsibility to ensure an audience can understand nuance? Can readers not parse it themselves any more, read with the subtext in mind? For this draft I say, as the youth say, fuck it we ball.

All those Blind folks running around getting brand deals and sponsorships and attention, they are the object of my intense envy. Many of them deserve the success! They’ve worked hard calling attention to the realistic plight of disabled folks around the world. They’re deeply embedded in the current disability studies paradigm and teach me a thing or two even as they teach those darned pre-disabled far more. I envy them, but I love them, and they get far less attention than the group that I will expressed unabashed disdain for. The folks, blind or otherwise crippled, who use their platform to do nothing but take brand deals, spread falsehoods about disability culture and living, while dishing out inspiration porn like warm potato salad at a child’s birthday party (I fucking hate potato salad, so this simile’s mileage may vary if you like warm, slimy, gross ass potato salad).

The latter tend to get more attention, more views and more sponsorships and more “success,” than the former. Partially due to the latent fear that all pre-disableds will become disabled. They want to know they’ll be okay and hate to see the hourly violence, political and otherwise, distributed through the disabled community.

My most recent (and most successful) stint in therapy was brought about by a particularly harsh spell of such envy. Someone that used to be a friend went on a popular dating show and used her disability to gain heaps of attention and sympathy from the audience as her disability mirrored the name of the show. She commodified herself and her disability and it hurt to watch. Fine, go for it, get your bag, but make sure you’re willing to accept the reality of what that attention brings. Make sure you don’t say such horrid things as, “I fortunately don’t have to use a cane yet.” There is nothing unfortunate about using a cane (I love mine) and there is nothing fortunate about not having to use one. It’s an irresponsible precedent to set. Make sure that you display a lifestyle accurate to what newly disabled comrades can expect, especially the realities of not being able to drive, needing the aforementioned cane, and needing an intense interest in the politics that drive our existence.

Make sure that you don’t sit there and do nothing but cry about your diagnosis while harvesting stalks of claims of inspiration.

My ire, my disdain, my disapproval, are in a constant fight with my envy. So many of us have to plough through our daily lives proud of our canes and facing our realities without the support of corporate sponsorships. So many of us dedicate intense time to ensuring our community is better served by policies, by institutions, by social paradigms. And so many of us die in gutters of obscurity because we are not inspirational, but angry. I want that attention, I want that audience, I want that free money, I want to know what it’s like not to feel shame when I have to “pass.”

I envy those people who can be inspiration porn.

But more importantly I envy a reality where those folks aren’t standing above the people doing the real work. The people doing the reading, the advocating, the painful effort of ensuring we survive on a day to day basis. Where most people live, not in the studio of a painfully ignorant dating show.

I want to celebrate the successes of all my comrades and I want to be able to say I can witness said success without a green slug writhing around in the chambers of my heart. Infighting is the last thing we should be doing, but infight we must when we can’t even have our global representatives be on the same page about what we’re fighting for.

I do mourn this friendship that I am tantalisingly keeping not-so-anonymous as I want more blind people in my life. But I have standards for my friends and those standards include a general awareness for how to communicate about your disability. Those standards include having an awareness of what image you’re painting for our comrades. Those standards include an outward public demonstration of furthering your education on your own situation and the context it exists in.

Those fucking standards include being proud of using a cane. Only cowards hide their cane behind their brand deals. Only the ignorant claim that Love is Blind is a simulation on what it’s like to date while Blind.

Some time ago I wrote an essay on my own reluctance on being “cured.” It was the first essay I ever released during my stint on Substack and it marks a time in my life where I hadn’t fully developed my own views on “cures.” I was eligible for a trial testing a therapy for retinitis pigmentosa and hadn’t quite separated myself from the ideas implanted in my still-folding brain by my ableist family. A cure, a fraction of me still thought, was the ultimate goal. I did hours of testing in a van carting around ophthalmology gear, feeling gross the entire time. The technician waxed on about how inspiring the Blind people he met are and how great it was that cures were popping up; how was I supposed to argue with the strange man who was digging around in my eyes in a van parked behind a hotel? I ultimately dropped out of the trial. Not because I had fully formed opinions on cures, but because the process of receiving the treatment was completely inaccessible to me as a Blind person.

I am steadfastly cure agnostic now, in the sense that I don’t think I’ll ever want a cure. There are many activities that I mourn and many more that I will come to mourn, but relinquishing my identity as a Blind person to pathology is a funeral more painful than just learning to read books in Braille.

This television star that I have referenced in all but legal name has no such hang ups, at least not publically. If it isn’t already obvious by their public persona they have no love for their disabled self. Their stated mission is to help raise funding for a cure and to eventually secure said cure for themself. They are comfortable with the cultural lobotomy because, as I suspect, they were never comfortable with the culture to begin with.

I envy that certainty as I have never had it.

I envy the ability to look at something that has done intense harm and say, “Yes, I am more than willing to kill you.” Even as it cries, knowing that it will die hated, pathologised, and misunderstood.

But I don’t envy it enough to think that is the right way to look at disability and I don’t envy it enough to view my own life as something that can be whittled down to a false cure/uncured binary. I certainly don’t envy it enough to think they are worthy of admiration.

I do have to go against my “fuck it we ball” proclamation and spell out a fair caveat – yes, if someone wants a cure then they should be able to get access to it. Your body your choice and so on, I don’t have a problem with that and nor should anyone. But I do urge us to recognise that disabilities are disabilities because we insist on a world that keeps them that way. We already have “cures” for most disabilities on this planet, we just choose not to enact them. Hence my disappointment towards someone funnelling money into an organisation dedicated to finding a medical cure for blindness when that money could fund Braille book distribution or orientation and mobility training accessibility.

I also have to call attention to the fact that we are not living in a Gene Roddenberry socialist utopia where medical treatments are freely gifted as the need arises. Do you really think that if a cure for blindness were plopped into the market it would be made affordable? Available? Reliable? Even safe? We sink heaps of money into a promise that will only go on to give a select few heaps more money. Canes can be made easily affordable, and are free in the United States from the National Federation of the Blind, but a multi-step, intensive gene therapy can only be made affordable when the primary economic mode doesn’t necessitate profit over people. Should we, as disabled people, truly reward the institutions that have kept us lingering in our artificial suffering, or should we put our fundraising efforts towards the tools and policies we need to enact the change that affects all of us?

There is, I hope I’ve shown, a small part of me that longs for such simplicity in life, that cure=good and disability=tragic. A petulant child that looks at the labour I have put into my life and wonders, “where is mine?” I know that the conversations surrounding cures are messy and I have been forced to reconcile with my own internalised ableism, which is a convoluted, frequently painful process to go through. Especially when there is no fungible reward. I also have to reconcile those feelings with the reality that I am lucky that I can make these distinctions and have this insight with myself. I can envy an admiration for false dichotomies as much as I want, but if the monkey’s paw curled I’d find myself a human that I would hate.

I hope, in some desire for retribution, that I inspire a comparable envy. That my love for my culture brings to light a certain lack that can be filled. That my cane usage shows how a cure is already available to someone who wants one.

I hope that my writing about envy normalises the complicated interpretation our lives necessitate. That we can have conflict in our convictions and desire for something we would regret.

I also hope it somehow gets to this person and they identify themselves and get really weird about it and give me publicity since there’s no such thing as bad publicity and then I skyrocket as the originator of some beef with a darling dating show contestant and profit off the feud to a point where I can continue to fund my “teaching hobby” and retire in the snowy hills somewhere and just write inflammatory headlines that lead to nuanced takes on disability while writing books and reading as the world outside my office crumbles as people can’t decide who is right, me or them, while I know the entire time that you don’t have to pick one person and the entire conflict is propagated solely for the enrichment of my own coffers until someday you realise that it’s an artificial culture war or just decide to write beyond the headline and then looks at your palms covered in the ejaculate of your own intellectual failings and then come back to this and leave a comment that just says, “wow, so true. xoxoxo”