This is a series of posts designed to help people approach diversity and inclusion. These are questions and scenarios we’ve actually heard or seen in the wild. This is part of our corporate programming for Diversity, Equity and Inclusion. For more information, click here.
Question: I feel like people with disabilities have kind of hitched their wagon to the social justice movement and created a new kind of discrimination called “ableism” to further create more advantages and special treatment for themselves. I fully understand the need for things like wheelchair access, handicapped parking and accommodations for people who can’t see or hear, for example, but now it seems like everybody with any kind of diagnosis, especially the so-called invisible illnesses can cry foul whenever they don’t think they are getting the red carpet treatment. Doesn’t the American Disabilities Act provide a lot of benefits the rest of us don’t have?
You want me to hold still? Are you looking for…yourself? In me? A crip? Why would you do that?
Am I waiting for my red carpet? Am I receiving an honor of some sort? Why would I want that?
You know why it’s so hard to talk about disability? For the same reason it is so hard for you to talk about race, or sexuality…you talk down toward anything foreign or different according to arbitrary definitions passed to you by parents and teachers and friends and family. It’s a really, really long road. Believe me. You’ve got Steve King of CNN on the air telling all that he has Multiple Sclerosis…which he had kept secret. Why secret? Why would one not want co-workers, friends and acquaintances, the viewing public, not to know you have an incurable, chronic condition? Why indeed. Cuz it ain’t cool being perceived as a broken human, less than human, differently human. We need to talk…
“Am I my brother’s keeper?” Pure sarcasm sure but the question remains concretely unanswered and sadly, Judeo-Christian tradition fails horribly at living up to the ideal. And continues failing even as I type.
Does the gate of humanity (isn’t that a horribly huge and loaded opening for a sentence? -beg your pardon for being so easily astonished) hinge on an answer rising from the Choir of Crips? Does thinking about doctors and premiums make your heart coo? We are all at fault. Answers can be had with dialogue. Are you your brother’s keeper? Do you know what it is like walking in someone else’s shoes for a day? Does not such a possibility of transformative experience terrify you? Would you be better for it? Gain insight even? I’m not gonna try and answer any of that. There is money in keeping us at odds, coercing our silence, burning us out and very very slowly choking us off. You cannot know what it is like to be suddenly on the other side of the velvet rope after a lifetime of what, in retrospect, serves now as an extravagant nostalgia…remember…running up that hill? Twisting the night away? Every day and every night…
What has the ADA done for me? Personally not a lot…at this point in my disease course, and I expect said ADA to be stronger by the time I need shelter under its umbrella. But, that said, I did not get fired when I shared my diagnosis of MS almost 10 years ago. I continued doing field work up until 3 and a half years ago. Somewhere around there. Now I’m a Bid Coordinator. In fact I was never made to feel uncomfortable or defective. By law too. Thanks ADA…
I am fortunate being surrounded by good people. And a bit of luck never hurts. But implementing change by just citing statistics can lead to misleading conclusions I think and I think much depends on the question and question structure; ultimately and often it depends on disability itself. Types of disability and unusual themes that twang or don’t return at all..Agharta – improv baby improv..(even if the music isn’t your thing…the cover is epic…). Nevertheless stats are interesting idea numbers if nothing else. Where we are going. Where we have been. Or you can simply use your imagination when considering Jason DaSilva and his AXS Map project, imagining what could be some day.
People want answers. Realm is the information of coin. The algorithm of the brain…I’m a mutha-fucking monster…someone is gonna devour your head if you continue not paying attention to the frictions between all of us. There is dire need of dialogue. If you can only define disability by canes, wheelchairs, or dark glasses then we…fucking hell: a safe and effective Covid vaccine got made in less than a year because lives depended on it…I guess I am a touch disparaged that maybe this discussion will take place finally…it’s 2022…after so much nothing. Why do I know such things after only 10 years? I read outside my comfort zones. I’m not even sure that disability struggles and rights get a mention in high school texts anymore…although I have no doubt that the kids will find ways. It’s in their nature.
I have left Tysabri – my FDA approved MS monoclonal antibody infusion therapy. Just going with traditional Chinese medicine. Acupuncture needles and herbs for tea. Some Moxa sticks. A microwavable mini herb-pillow for dreamtime. Western medicine has brought me nothing but stress it seems. Well that’s not true. Dental health providers are a marvel. And western medicine got me through me infancy and childhood.
It seems to me though that one reaches a certain age and then the plodding leviathan that is Medicin-icalia emerges from your accounts with one ill-souled purpose. My point being I can no more confirm the effectiveness of the therapies I have been offered and at times tried from MS Day 1 til now…MS Day 9 years, 5 months, 22 days…than dismiss other untried options, options which likely will seem as fiddlesticks to those purely ground in neurology & movement disorders. Yes I admit I have reservations about the western approach to disease(s) for which definitive cause is horribly and, much to my fascinated frustration, theoretically elusive. That does not stop me however from asking questions and questioning available information. So how does that make me any different from you? I’m just crippled after all. I would go so far as to suggest that we are all crippled by something…Does that seem far-fetched?
I think that with chronic conditions one must know thy partner as well as can be. I beg you please don’t be afraid of whatever fucked up malady has beset thee. Know your partner…that is the only pro-life choice that should matter to you. You cannot keep running from this…whatever this may be for you…
You and I reader cannot even talk about our issues without us first recognizing/acknowledging the problem that exists between the able-bodied design world and our dimension of difference, you and I have unresolved issues…like why do you keep moving further and further away from me? When can we sit together over coffee and talk about why you ignore us, why you see past us, why you fail to recognize that we can make money for you just like any waif. Crips are not defective. Yeah, I know, complex. So much more than that. We too understand what it is to be accountable for one’s actions…likely better than you. Spoon allotment you know. Think about this for a sec: most of the time when people ask how I am doing the question is framed in reference to my back and not the MS. Back issues unite humans and neurological ideas befuddle.
Answers?! You! We cannot begin to comprehend each other’s reality until we first try to imagine beyond shallow caricatures, benign feelings, sexual functionality, and beyond the ‘good start but limited’ option that just being in the other’s shoes would simply suck. Etc. Ableism is entitlement. And one cannot apologize for facts. Why has much of the ADA yet to be implemented? Answers?! Let’s talk the dark stories surrounding the MDA Telethon – what had ostensibly been a huge beacon for disability awareness and rights in this country but never was…crips cast for pity, for money. Have we, any marginalized community, ever asked for anything that was already gifted as a right to the abled? Please educate me. Seriously.
So has life gotten better for the disabled in the glow of the ADA? Well…wasn’t it just 2017 when Administration tried to slash government funding of Medicaid from it’s current 90% (thanks ACA) down to 57%. Yeah it’s true – many in the crip community rely on federal assistance. Through no fault of their own…being chosen to miss the pass from one trapeze to another and falling into that net below…far, far below…gaps in the safety net are getting bigger for everyone. Everyone of us…hmm…broad and inclusive indeed…Of course there are many of us crips who are not out of the closet either…
Insurance. Rejected claims. Ombudsmen. My only known relapses occurred while on a disease modifying therapy. I lost count of how many we – we of the MS persuasion – have now. This rant begins with a letter regarding payment for my therapy infusions. And mentioned how Blue Cross Blue Shield of Texas and their well-respected core of physicians found it in their hearts to decide that my infusions were not medically necessary…in the absence of more…cold persuasion as it were. A more fist; fistful of dollars. Can I blame them for milking the system? Emblematic of the country in which I write, the 245-year old USerpent eating itself over and over again. A perfect unending loop of ignorance and suffering…
not medically necessary should only be used referring to the deceased and whether they still need car keys or the iPhone
…and humor when possible. I have days where I feel solid again and wonder if it is the Tysabri infusions or rather just another of MS’s quirks. Yes I have the complete opposite days as well. Quirky. People just don’t know what they cannot perceive and process. Imagine your phone autodialing all within a 50-foot radius randomly many, many times a month…and you couldn’t get another phone as this is the one assigned to you at birth…and none of the servicers can figure the phone out either…you just have to deal with the autodialing…and not forgetting to pay that bill dammit…
Is that not a shared issue? Dealing with insurance companies and the general slime…
I’m not complaining. The other evening Dianne, her mom, and I were out shopping and we needed gas. I pulled in and up to a pump. I had been sitting in the car, noodling on my phone for maybe 90 minutes. I get stiff. A little spasticity goes…I get out and begin awkwardly walking over to a trash can. It’s as if it’s first thing in the morning. So she calls out and asks if I’m ok and then offers some stretches that will absolutely help and I say thanks but my magic goes much deeper than that…and I point at my head. She nods and smiles bewilderedly. I walk back and pump gas. End. I appreciated the concern yes. Earnest. Now imagine you’ve taken ‘medicine’ before arriving at the hospital, been given a hospital shot, and your bladder is empty. You will get a gadolinium shot in maybe 40 minutes. For brain contrast. For multiple scar identification. Realistically equal treatment is a double-edged sword: you normies treat each other like shit daily…So what are we crips really after?
Yes it’s exhausting to think about. Imagine having to theoretically rewire and connect various brain transmission pathways daily. Almost as if you’ve been targeted, singled out by strange, nefarious forces an idea that you know is ridonkulous and yet…You’d think it would be too much to overcome. You might get depressed. Despondent. Downright dirty n’ mean in your personal relationships. Yes you might. You might also play the Trout, play that cello until bowing is no longer possible, balanced sitting is no longer possible, trying to recall the poems you read at the open mic last month cuz here you are again and you did not make a list…
Soapbox moment: remember this if nothing else…oppressed people must support oppressed people. A social contract if you will with spoons, a truce, and rolling chairs…
Spoon Theory is really a thing. Look into it…
Discouragement = Stress. I’m not sad. One adapts. Anyone – crip or not crip – would too.
Postscript / Prologue…cuz I just remembered it…
Maybe 3, 3 ½ years ago I actually had to work out in the field. Scheduling mistake attributed correctly on me. We were hired to look for buried subsurface utilities and/or features that might compromise drilling and excavation activities. I was to PM with one of the new hires that I had heard only good things about. And I can only assume he was briefed on me. One of the technologies we employed for this project was high-sensitivity metal detection which involved pulled a wagon like apparatus consisting of a transmitter and a receiver, and a power source screwed into a backpack. Lots of cables.
I had collected data in maybe 3 or 4 of the areas of interest. I got down to my knees to untangle and unburden myself of equipment and when I readied myself to stand Joe was there, hand extended.
Post-Post Script / Prologue
An officer involved shooting. This time involving a 61-year old male in a wheelchair. Yeah he had a knife. Supposedly he had tried to shoplift a toolbox…so he was shot 9 times in the back. There is a thread connecting BLM with Me Too and also with Disability rights…
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