Foreword
“It is impossible to see reality except by looking through the eyes of the Party. That is the fact that you have got to relearn, Winston. It needs an act of self-destruction, an effort of the will. You must humble yourself before you can become sane.”
– George Orwell, 1984
Disability can be isolating, a reality so taken for granted it might not require exposition. We understand that disabled people are isolated physically by “normative” design standards that do not account for different bodies. We talk about how disabled people can be isolated economically by education and work systems designed for neuro-specific function. We explore how disabled people are isolated culturally with disabled characters often existing as plot devices, something to be solved or resolved by the nondisabled main character. Even our lived experiences are held at a distance, with disabled people thought to be “inevitably exposed to a discrimination that cannot be shared”, in the words of psychoanalyst Julia Kristeva in Hatred and Forgiveness (2010). But there is another experience of isolation that is not as widely acknowledged: our isolation from each other and ourselves.
Many of us are born into nondisabled families, with parents or siblings who have no comparable experience. Many of us, especially those of us in rural regions, will grow up in classrooms dominated by nondisabled students and teachers. After graduation, we will often be the only, possibly even the first, disabled person in our workplace. While we may be welcomed in these spaces, once proving an appropriate proximity to normalcy, this acceptance can also feel incredibly fragile. At times, it can feel like our acceptability must perpetually be proven or we risk (r)ejection, back to the shadow realm of disability. The outcome is spending much of our lives relating and responding to the able-bodied world, seeking access to a community that hinges on our capacity to not be disabled. As Erving Goffman notes in Stigma (1963) this might be managed through things like self-deprecating humour or skill mastery but, for others, it can mean a complete rejection of the disabled community, driven by a belief that to be in community with other disabled people only confirms one’s “spoiled” status.
All of this is to say that when one spends most of their life living under the watchful eye of the Normalcy Party, it is difficult not to internalize at least some of the doublespeak.
For academics like Fiona A. Kumari, this is the insidious nature of internalized ableism. If every person you encounter is convinced that disability is a tragedy, and offer praise when they “don’t even see you as disabled,” it should be no surprise when people begin to see disability as a negative asterisk affixed to an otherwise “normal” subject position. We are asked not just to reduce disablement from our subjectivity but to wholly erase it from our existence. One of the cruelest demands of internalized ableism is mandatory self-immolation: a perpetual need to burn off the contaminated bits of us to leave fertile ground for a “normal” self to emerge. More than just being compelled to able-bodiedness (see Robert McRuer), we are all indoctrinated to both desire and be willing to sacrifice everything, even our very identity, for a mere chance at grasp the gold ring of normalcy.
Or, put another way…
“Four wheels good, two legs better! All animals are equal. But some animals are more equal than others.”
Dr. Jeff Preston, PhD
Associate Professor, Disability Studies
Grief & Eugenics: And Ableist Horror Story
A brief history of disability & grief
In the beginning, there was disability. There just was. Both congenital (born with) and acquired disability happen naturally. You might be shocked to hear that they happen outside of the Human race as well. We have found some very unique ways of contextualizing it. However, we have a habit of fearing, vilifying and demonizing what we do not know or understand.
“People of Akwesasne explain, without apology, that it isn’t disability which makes people different so much as it is the assumptions and misunderstandings that go along with it.
Despite the tireless efforts of family and volunteers, many Canadians with disabilities still face a life of isolation and dependence. Too often they feel shut out of even routine daily concerns, like shopping or visiting friends and neighbours. Attitudinal barriers, more than anything else, prevent persons with disabilities from contributing to and benefiting from the richness of community life. Simply put, there is a lack of awareness and understanding for the potential and the aspirations of persons with disabilities.”
From the book TE-WA-KWE-KON: Together As One.
I feel like I need to state that in no way am I a sociologist, historian, psychologist or in any way a certified anything (asshole maybe). What I do have is my life experience. I was diagnosed shortly after birth with a genetic disorder called Osteogenesis Imperfecta (OI), more commonly known as Brittle Bones disorder. I stopped counting fractures and surgeries when the numbers hit the high 80’s before I became a teenager. I largely use a wheelchair to get around these days, though if I am fracture free I will also use a walker for those hard to reach spots (stairs, sand and grass oh my). My life has taken many unexpected twists and turns over the years, leaving a lot of wreckage, but mostly grief in its path. Since getting sober a couple of years ago I have been putting a lot of work into picking up the pieces of my life and trying to figure out just how I ended up in the situation I find myself in. It has not been easy work. I know that I have so much yet to sort out, build upon and learn.
Growing up I struggled a lot with not being “normal” and unable to participate in the same activities as my peers. Sure, finding a participation ribbon on my desk after track and field day was a nice attempt to make me feel part of the class. In reality it was a lesson in the half measures society would rather be seen trying to make an attempt at rather than instead of making the effort to truly be inclusive. After all, while my classmates ran, jumped and shot put their way through the day, I was at home playing River City Ransom on Nintendo. If anything, the ribbon acted as a lasting reminder of how I was actually excluded from the event. However, I was taught that I should be thankful for what little I was given and not rock the boat by asking for too much.
Why is it seemingly so hard for society to be more inclusive for folks with disability? Disability isn’t anything new, so why is there still such a struggle for awareness, understanding and acceptance? This often looks like accessing systems that were designed and built to purposely exclude people with disability. I can personally speak to the lasting effects of social segregation, othering and bullying as it slowly builds and reinforces tremendous amounts of self-loathing, which is sometimes referred to as Internalized Ableism in the disabled community. This is the feeling that we are less than, not of value, and not worthy of what non-disabled folks take for granted.
This inherent privilege non-disabled folks enjoy is challenged when they are forced into addressing disability. This is because disability is something they think they have not witnessed in their daily life. This is largely because of generations of isolation and institutionalization of people with disability. When the situation does arise and non-disabled folks come face-to-face with disability it comes as a bit of a shock. I say shock, specifically, because if you saw the looks I get when I wheel through a Walmart, there isn’t a better word to summarize the expressions I observe when we make eye contact. At its core, I believe what they are actually experiencing is the realization that their privilege of good health is potentially fragile and indeed temporary. That at some point in their life, unless they die first, they will become disabled, either acquired from an injury or just simply from the aging process, and rather than accept this truth they push it away like a toddler with a plate of brussel sprouts. As though it is a choice. As though they can protect themselves from it. Sometimes people’s gut reactions say more than words ever can. This fear is nothing new though – it has been documented for millenia.
Years ago I picked up a book called The Origin of Satan by Elaine Pagels at a bookshop strictly because I thought it sounded metal and badass. Like a lot of books I have purchased, it sat on my shelf for a while. Honestly, it was well over a decade after I picked it up that I read it because I had found a memoir written by an Italian exorcist in the Catholic church (An Exorcist Tells His Story by Fr. Gabriele Amorth). I thought it would be interesting to start with the origins of the devil before moving onto how one evicts them from a meat suit. It turned out to be enlightening to read them from my perspective as both disabled and person in recover
The term Satan is derived from the Hebrew verb “to obstruct, oppose”, and it is not until later on in the Bible that we are introduced to the actual personification that we recognize today. It wasn’t the Devil that tempted Eve but a talking serpent. The real embodiment of Satan doesn’t happen until the back half of the bible (the new testament), corresponding with a time when the Christians were at war with the Roman and Jewish peoples. This is why even to this day the character of Satan embodies a lot of anti-Semitic stereotypes; he was the personification of evil, and was used as a tool of persecution. Early Catholic scripture would continue to demonize and vilify the things that they feared and didn’t understand.
The Bible is filled with stories of Jesus’ miraculous laying of hands and praying over people, casting out demons, absolving sins and forgiving transgressions. People with paralysis could walk again, blind/deaf regained senses, lepers were cured and reunited with family and community. What lasting narrative do these stories create being passed down over generations and millenia? I have had more than a handful of awkward situations where people tell me that they will pray for me to “get better”. I feel like it isn’t a huge jump that in the minds of many, disability is inherently evil or wrong and must be cured at all cost.
I remember at a rather young age watching TV one sunday and coming across Peter Popoff. If you are unfamiliar with his antics in the 80’s, he was a televangelist, clairvoyant and faith-healer. He was the guy you likely remember laying a hand on a wheelchair user’s forehead, praying over them, and then having them jump up and start dancing after being absolved of their sins and having the demon cast out of them. To say I was shocked would be an understatement. The potential of being cured of OI, of no longer breaking bones, needing endless surgeries, and being able to participate in track and field. Finally, I could try to win something better than a participation ribbon. As the tv show continued, it turned out that I didn’t even have to go down south to find Prophet Popoff. I could send away for a small vial of miracle water for a nominal fee, of course, that would cast the demons out of me.
Obviously, I immediately asked my mom for the money to buy the holy water. She shot me down. I then asked if we could go see him so I could be cured of my evil affliction. That is when my mom had to explain to me how he was a fraud and was lying to people to get money from them. When I asked about all the people dancing in the aisles who were once in wheelchairs like me, she told me they were actors. This rather quick interaction shattered a lot of illusions in my little mind surrounding faith, religion and an individual’s personal intent.
Societies have long dealt with situations involving people with disability through a lens of negativity, as though it was a problem needing a final solution and ignoring the nuance and individual subtlety of disability. If you aren’t Jesus and magically curing folks isn’t an option then what do you do? Institutionalize, sterilize and exterminate in a practice known as Eugenics.
When individuals were not able to be cared for at home by family, institutions were set up to house people with disability en masse. Unfortunately, I am sure you can imagine the kinds of conditions folks were forced to live in. Things were not much better if someone lived at home with family; as they were essentially on house arrest and not allowed to socialize with the common public.
Punishment was thought to be appropriate for individuals with physical disability should they leave the house or escape the prison-like institutions in 1729 England. Eventually America got wise to this idea and in 1881 started passing what are now referred to as the Ugly Laws. These laws were specifically targeted at impoverished and/or disabled community members by either incarcerating or fining them for being in public. For example Chicago passed this into law:
“Any person who is diseased, maimed, mutilated, or in any way deformed, so as to be an unsightly or disgusting object, or an improper person to be allowed in or on the streets, highways, thoroughfares, or public places in the city, shall not therein or thereon expose himself or herself to public view, under the penalty of a fine of $1 for each offense (Chicago City Code 1881)” ($1 in 1881 is roughly $30 in 2023)
Often the people who were arrested were then shipped off to poor houses or work farms, to ensure they remained segregated.
America quickly became the shining example to the world of how to manage populations that were deemed inferior. So much so that a young rising power in Germany looked to the lessons Uncle Sam had to offer to start writing their own legislation. In 1933, Nazi Germany passed the Law for the Prevention of Hereditarily Defective Offspring based on laws already written by the Eugenics Record Office in the United States of America. From this law it is estimated that 360,000 people with diagnosis ranging from schizophrenia to chronic alcoholism and other forms of social deviance were sterilized between 1933 and 1939. At which point the government passed Aktion T4 which authorized the involuntary euthanasia, or mercy killings as Goebbles would phrase it in his propaganda films, for people with physical and mental disability. Although largely undocumented, people with disability would be the first victims of mass murder by the Nazi’s. By the end of the war they would go on to kill an estimated 275,000 to 300,000 people with disability.
Though social revolutions have happened around the world (the Ugly Laws remained on the books until 1974 in America) to help give disabled folks rights, forced institutionalizations and sterilizations are still happening to this day. Just this past November, after 10 long years of fighting, a woman in Halifax was able to move out of a Long Term Care facility and into her own community. If you are looking for a real horror story google what the “Ashley Treatment” is. It symbolizes the atrocities bodies with disability have had to endure to make non-disabled people more comfortable.
This is the inherited grief that people with disabilities carry with them as they move through their life, forever looking for an escape from systems that impose suffering upon them. Some folks find the courage to advocate for systemic change. Others try to find serenity in accepting the fates forced upon them. Myself, I took another path, which led me to discover a grief few people have experienced. My only hope is that by sharing my experience it may help other people, whether that be to connect, share, be seen, and/or heal.
Hand Cut Company
Previously on my so-called life, I lamented about how I identify with the myth of Sisyphus in relation to existing as a person with disability in our capitalist society. Particularly with my search for employment in a field I paid a college far too much to be a part of and coming upon one ableist roadblock after another. All in an attempt to escape the challenging life brought on by abysmal government assistance programs. Something I really didn’t touch on in my last essay was my reluctance to exploit my disability for financial gain. Surely, I had more to offer this world than my stories. There are frighteningly few options available currently for people in my situation. The more I thought about what would be my breaking point for applying for MAiD (Medical Assistance in Death), the more time I spent thinking of ways to navigate using my disability to make money that didn’t make me physically ill. I was really stuck on feeling like I was having to exploit myself by using my disability to make money.
During a rough patch of 2018, which I will get into more detail later on in this essay, I found myself in need of a creative outlet. I started a side hustle called Hand Cut Prints. The name is a cheeky take on the fact that I am a natural born klutz. Every time I would cut out a stencil to spraypaint, or carved a linoblock to print by hand, I always managed to accidentally cut myself. The name also worked because being a klutz and a wheelchair user I often smashed my hands off of doors, walls, chairs, and pretty much anything.
A good friend of mine got me in with the Punk Rock Flea Market crowd in London. I was moving through a lot of emotional stuff at the time, and so I went on to be the grumpy guy in the corner trying to sell felt pennants with stenciled curse words on them. Needless to say, the reception was lukewarm, and so Hand Cut Prints slipped into hibernation. Though, I still have a STACK of pennants in a plastic bin under my bed, so if you need one slide into my DMs.
Fast forward to fall 2021, having gotten sober during the pandemic and being bored to death I once again needed a creative outlet. This time when I brought back the side hustle I was making more than just prints so I “rebranded” to Hand Cut Company. Now because graphic design freelance work was hard to come by, the side hustle had become almost equally, if not more, financially important.
By late November 2022 I had vended at nine markets and I was stressfully preparing to be at two large holiday markets in one weekend. This was just the beginning of three back-to-back weekends of holiday market vending that I had ahead of me. I was stressed, nervous and anxious, but I was also really excited about how things were going. Over those nine markets, I really started connecting with folks and realized there was space for me to start bringing in some disability justice content. It started with Anti-Ableism stickers, then patches, then antifa wheelchair symbol with the tagline “this machine kills fascists”. For the holiday season I partnered with a local fiber artist with disability and had a batch of red and black “Company Toques” made. The best part is I paid her what she would sell it for (not wholesale cost) in cash so her ODSP wouldn’t be affected. Hand Cut Company was becoming a proud company with disability.
The biggest piece I had prepared for this holiday string of markets was my zine The Myth of Sisyphus with Disability. It was the first time I had written something so open, honest and specific about my experience with disability. My anxiety was through the roof about how it might be received, even though my friends who edited it had nothing but fantastic things to say about it. Lost in a world of mixed emotions, a facebook message instantly cut through the noise and stopped me in tracks.
“Hey, sorry for the very abrupt message. Josh is not doing well healthwise it is anticipated that he may die this weekend. If you were interested in sending him a final message, his sister would read it to him or play an audio message. Here is the phone number…”
JOSH
Josh and I met at a very early age as campers at Woodeden Easter Seals camp just outside of London. Recently, when I watched the Oscar nominated (robbed by that damn octopus movie) Crip Camp on Netflix, I was shocked to see just how similar my experience of camp was…minus the crabs outbreak and social justice revolution, of course. The counselors were there to help with personal care and they also often became friends of ours. I learned about George Carlin, Noam Chomsky, Propagandhi, Carl Jung, Karl Marx and my guitar playing kept getting better and better all thanks to a handful of counselors that truly left a mark on my life. Though, it was the connections I made with my fellow campers that were most important – even though I didn’t realize it until 30 years later.
I don’t remember exactly how we met, or what nonsense we initially bonded over, but it was very much that stereotypical camp friendship that is often depicted in books and movies. We ate breakfast, lunch, dinner and snacks together. Josh, and his younger brother David, were diagnosed with duchenne muscular dystrophy which is a genetic disorder where the body’s muscles slowly degenerate. This really didn’t mean anything to me at the time, just that I would often lend Josh a hand reaching for things or filling his plate. We had a pact that whoever arrived first at camp would make sure our beds were on the same side of the cabin so we could stay up and talk all night. We would talk about what boys talk about, what we thought boobs felt like, celebrities we had crushes on, and who we wanted to ask to go to the dance with. We would eventually plan elaborate ruses so we could sneak off from the watchful eyes of our counselors to get our first kisses from our girlfriends. Disability was rarely the focus of our conversation, because it was just part of our shared life experiences. There was just an unspoken understanding between us that was lost on other people.
As we got older we talked about bullies, politics and religion. One day we ended on the topic of mortality and it terrified both of us. I mean, it terrifies most people, it should, but we each had a unique relationship with it. Growing up my mom would come into my school and do talks about how my OI diagnosis affected my life. Broken bones, different rodding surgeries on my legs, and shortened life expectancy. That last one has haunted me my entire life. Imagine sitting in a room full of your peers being embarrassed by your mom explaining exactly how you are different from the rest of them, and then having that nugget dropped on you without warning. It really festered in me until one night at a neighbourhood pool party I worked up the nerve to ask one of my parents what happened when we die. I think this really took them back, as they deferred the question to our neighbour who is a nurse. She managed to gently explain how eventually our bodies stopped working, which didn’t really satisfy my young mind. I wanted to know what happened after. She told me that no one can really answer that question because once you are dead, you are not able to come back to tell anyone what it is like. I slowly put a swimming mask on as I started to cry and put my head half way under the water so I could see above and below the water at the same time.
I shared this story with Josh during one of our late night chats. He came from a rather religious family and I think had a moment of pause about his view of an afterlife. If it did he really didn’t focus on it, he was more concerned about the window of time he had left. At that time, the life expectancy for someone with a diagnosis of duchenne muscular dystrophy was late teens to early twenties. Josh’s brother David also had chronic health issues, and Josh told me it was a constant reminder of how fragile his health could and would eventually be. We were all barely into our double digits and we were being told that the writing was already on the wall for us. There was still so much we wanted to do with our lives, after all we still didn’t know what boobs felt like!
This was something we both had in common, a fantastic sense of humour, and looking back now it was obviously our preferred coping mechanism. No matter how dark or sad our conversations would get, generally one of us would read the room and crack a joke to lift our spirits again.
Our friendship wasn’t exclusive to camp; we had traded phone numbers and addresses and we stayed in contact all year round. Letters, but more often phone calls, would happen regularly. As well, the camp we went to offered a respite program once a month during the rest of the year, where parents could drop their kids off for a weekend. More often than not, it was the kids at camp that needed a break from home rather than the parents needing a break from them.
Eventually, because I have the privilege of being able to handle all my own personal care, an opportunity arose. I was able to apply to become a Leader In Training and make the transition from camper to potentially becoming a counselor. I had already been helping my friends when and where I could with small stuff throughout the day, like during programs and in the dining hall. Best of all, it seemed like a great chance for me to spend the whole summer away from home and at camp. Camp was a place where it seemed like my disability was minimized almost to the point where it didn’t exist, unlike at school where I was being bullied more aggressively.
Looking back now, this was a period of my life where things shifted in a very drastic way, though it all unfolded so slowly that I didn’t realize what was happening. When I became a counselor I started working at a different camp, so I wouldn’t have to be providing personal care to my friends. This took me out of my last peer group of folks with disability. Though, there were a couple of other counselors with disabilities, and I did stay in contact with Josh and a few other friends. My environment had drastically changed, and no one at the new camp knew the old camper version of me.
During this transition a couple of specific things occurred. First, I had my first relationship with a nondisabled woman. I am now ashamed to admit just how much it meant to me at the time. To my teenage mind dripping with internalized ableism it was like the guy getting the girl at the end of Revenge of the Nerds. The other thing that started to happen was friends and former fellow campers were dying due to complications related to their disability. This was so incredibly hard to process. These friends I had grown up with, who were the same age, were now gone because of disability. It felt like the clock was ticking for me, so I doubled down, and tried to disassociate from my disability and the disabled community even more.
Over time I spoke to Josh less and less, and by the time I was off to college we were hardly in touch. I was too busy partying and trying to fit in to maintain our friendship. This was also around the same time I would start to grimace when someone would suggest I need to meet their other friend who also uses a wheelchair. It’s pretty damn presumptuous for someone to assume that disabled folks need to meet their other disabled friend (would you do this with your BIPOC friends?), but my immediate rejection of the idea should have been just as troubling. My thought was always “how dare you clump us together like that.” Hearing friends tell me “I don’t even see you as disabled” was me trading in my participation ribbon for a first place ribbon.
This went on for about twenty years. Roughly the same amount of time that I had last talked to Josh. Now here I am, over two years into my sobriety, having put a lot of work into my identity as a person with disability. Trying to process and move beyond my ableist views, and unpack all my lovely internalized ableism. The facebook message that one of my oldest best friends is on his deathbed shocked me in a way I didn’t anticipate. I didn’t know what to say. How do I even begin to apologize for ghosting Josh on our friendship? How do I explain the world of pain I caused myself by turning away from him and a community that meant so much to me at one point? The community that helped me navigate some incredibly tough times growing up. Not only was I riddled with questions like these, I was also overwhelmed with anxiety and pressure to prepare for the holiday market season. Looking back, I am surprised it didn’t make me relapse.
I realized that apologizing at this point of Josh’s life for being a truly shitty friend would only be self-serving to me. I decided I wanted to share a few cherished memories that have stayed with me. That he was one of the greatest friends of mine. I was in the middle of crafting my message to Josh when the same friend who reached out before sent me Josh’s obituary. I read it as tears rolled down my face. The picture they had chosen to go with it featured the same smile I remembered from all those years ago. I can still hear his childish laugh in my head. It both makes me cry and warms my heart at the same time. I had been through enough loss to understand that this is what grief can feel like. Both good and bad held together closely in my heart.
STUART, EVERETT & JONAS
Dating with disability is a fucking nightmare and it has only gotten worse in the age of dating apps. As I mentioned already, it played a crucial role in my disassociation from my disability and the disabled community. I felt that the less people saw me as the disabled stereotype the more worthy of love I became. Back in the day, the young curious pervert that I was would stay up late to watch Sex with Sue (a Canadian institution for my generation) and whatever sex education program was on the Discovery Channel late at night (in hopes of seeing some nudity). Yes, I did see lots of flesh, but I also accidentally learned some sociology too. Lessons like, masculine folks find red lipstick attractive because it mimicked feminine arousal. Feminine folks find physical fitness attractive because it went back to a primitive desire to be cared for in some prehistoric time. I also learned that connected to this there is an innate desire to pass along the best genes possible. This information reinforced my internalized ableism – why would anyone want my faulty mutated genetic strains?
All that being said, I did manage to have relationships. They were few and far between. Looking back now I am sure I was projecting my self-hatred outwards just as much as I was inwards, only scaring folks off. That, mixed with my desire to be loved and not feeling worthy of love, led to some pretty toxic attachment behaviors. Not to mention the boat loads of anxiety and depression that came with it.
In the fall of 2010, I had gone through a messy breakup. A relationship which I knew was doomed from the start but I had managed to latch onto until the absolute bitter end. Nursing my broken heart over a pint (or ten) with my roommate at our neighbourhood pub became a habit. We had started to hit trivia nights there as an excuse to go out on a Monday night and this is where I first met Jolene.* She was at the table next to us with a friend and after striking up a conversation we hit it off. It was a connection that slowly grew over a month. I had a terrible mustache growing for Movember and she had mentioned how much she hated mustaches. I already had a truck load of baggage and reasons in my mind why she would shoot me down. I waited until December first, after I shaved, to ask her out on a date. She said yes, coffee was had, and finally a crush turned into a like, and eventually a like into love.
Jolene lived a block away from me and because I had a roommate and she lived alone, we spent most of our time at her place. Her place wasn’t accessible and was too small to really get my wheelchair into, let alone make any use of it. As our relationship continued to grow, so did my physical mobility. I eventually got to the point where I was walking around unassisted, free from my cane and walker. For the first time in my life I was free of an assistive device, and boy did my internalized ableism love that. The distance between me and my disability continued to grow. Things were really looking up, until one day about eight months into our relationship she dropped a bombshell, “I don’t think I can be in a relationship with a person with a disability.” The shockwave of hearing these words took my breath away.
Through all my experiences dating, or more accurately “trying” to date, I had never had anyone actually say they couldn’t be with me because of my disability. Sure, I kind of figured behind some of the “I think I would rather just be friends” statements was some lurking ableism, but I had kind of gotten used to just hearing no and not trying to decipher it any further.
After a quick head shake, I collected myself from the initial shock of having been told I was potentially unlovable due to my disability and went on the defensive. I did everything I could to diminish my disability. Whatever I couldn’t alleviate I placed squarely on my shoulders as my responsibility and not hers. After all it was MY disability, and not hers. My position seemed to be winning her over.
Our discussion turned to starting a family. She felt that with her job requiring her to be on call and there was the potential that my disability would leave me unable to care for an infant with the same disability. The logistics of it seemed impossible to her. Again, I went on the defensive and said that there were many ways around this: adoption, prenatal genetic screening and in vitro fertilization were all options. I certainly didn’t see the value in passing on something that had already created so much grief in my life. Our highly emotional discussion went long into the night, we had both shed a lot of tears. In the end she wanted to give it some consideration before coming to a decision. I wheeled home sad and frustrated at 3 a.m.
The next day, after getting no sleep at all, Jolene invited me back to finish our conversation. She wasn’t ready to give up on what we had and so we decided to take things one step at a time. We both came back to the relationship with renewed energy. We kept up a slow and steady momentum and within the year we got our first place, a dog (Pogue) AND a dishwasher together. Things were going better than I imagined, only I hadn’t realized the burden I had taken on with the concessions I made in our discussion. A constant anxiety began to build in me: should my disability ever present itself in an overbearing way the relationship would be over and once again I would be an unloveable misfit. I always found a stiff drink would really help melt away that anxiety.
Now that we had our own space we started taking the family discussions more and more seriously. We decided that we were trying to start a family without disability. Being so detached from anything disability related for so long I didn’t comprehend just how toxic that statement was. We talked through all of our options. Though we weren’t against adoption, we both really preferred the idea of having a child of our own as that was what our friends and family around us were doing. It came down to two options – both involving genetic testing. One was doing in vitro fertilization (IVF). This would involve doing genetic testing just a few days after the cells had started dividing. Then implanting an embryo that didn’t have my faulty genetics, or as the lab called them “viable embryos”. However this option cost a lot of money which we didn’t have an abundance of. We ended up deciding to take the other option. This was getting pregnant the old fashioned way and then doing prenatal testing around 15 weeks into the pregnancy. We would then make the decision to continue on with the pregnancy or end it.
It took some time but eventually Jolene became pregnant. We were ecstatic and wanted to tell the world, but because this was only the beginning of a process we only told the family and friends close enough that we felt comfortable sharing all the details with. It was nerve-wracking waiting for the prenatal testing appointment. Our house was electric with the excitement for all the joyous possibilities. We started talking about names and what colours we would want in the nursery. We knew it was a fifty-fifty chance that I could pass on my OI genetics and what we would do with that information. That didn’t stop my ex from finding a heartbeat on a doppler (portable ultrasound) and sending me a video of it at work. My heart melted the instant I heard it.
Finally the day came for the test appointment. It really is a difficult procedure to go through. Physically it involves a large needle and plenty of discomfort, and psychologically not only are you left waiting for results, but there is a significant risk of miscarriage as well. It went smoothly though, and before too long we were back at home trying to act cool as we waited for the result. Since Jolene was regularly on call, and potentially not somewhere appropriate to deal with the news we had the doctor call me with the results. I still remember seeing his number come up on the phone while I was at work about a week later. My voice cracking with nervousness as I answered it.
Unfortunately, the doctor did not deliver the news we were hoping for. I was crushed, and shed a few tears as we discussed coming in for our follow up appointment. We had already discussed with him what our decision would be depending on the results. After hanging up, as the tears continued to roll down my face, I thought of how I was going to break the news to Jolene.
I firmly believe in a woman’s right to choose to do with her body as she feels is right, and that my role is to be the best supportive partner I can be. This story isn’t to debate the right to choose, but to discuss the decisions made around genetic testing. I firmly believed in that moment that we were making the right decision with the information that we had. Jolene decided she wanted to experience labour, giving birth to our child after having been induced, so that we could meet, hold and spend time with them. I can not describe to you how angushing it is making these decisions and also dealing with waiting periods after having done so. We cried ourselves to sleep every night leading up to the day of our appointment.
I am not going to go into any details of that day, but feel it is important to acknowledge that on August 28th 2015 our son Stuart Indio was stillborn. We had named him after Stuart McLean, the famed Canadian raconteur from the CBC radio show Vinyl Cafe. Listening to it was our favourite Sunday morning ritual. Indio, we chose because we had just gone on a trip to the music festival Coachella, which is held in the Indio Valley of California. We spent a couple of hours holding and sharing our love with him. We took a few photos with him. I haven’t looked at them in a long time – they are some of the saddest photos I have ever seen. The look of heartbreak on our faces is indescribable. At that time I wanted a family more than anything in the world. A feeling of regret snuck into my heart, though before long I was lost in all of the emotions all at once.
It took us sometime to come back from the loss. The hospital connected us with a counselor to talk to. This helped us navigate some very raw emotions but what really carried us through this challenging time was still wanting to have a child. As we navigated our grief, one thing that managed to act like a light at the end of a dark tunnel was that the provincial government had just started a program that covered a couple’s first round of IVF. Not wanting to find ourselves in the same situation as with Stuart we jumped at the opportunity to apply for the funding. We were able to secure it rather quickly, leaving only the genetic testing for us to cover. This was a fraction of the price of the whole process.
Still grief-stricken, we began making trips to Toronto to an IVF specialist clinic. Being the male half of the equation I got off far too easy in the equation. I tried to be as supportive as possible every step of the way. However, after months of appointments, countless self injections and procedures my partner had to put herself through, it was all for naught. At the end of the day only a couple of the embryos had matured to the point where testing was possible. After the testing, only one was considered “viable.” I still cringe every time I hear that word. Sadly, our one chance with the whole process didn’t work out and we were back at square one.
We took some time to unpack from the journey we had been on and tried to not put too much pressure on ourselves to figure out the next steps. To do IVF again would mean paying for the whole thing out of pocket and we were not prepared for that. Jolene was by far the breadwinner in the household, my paycheques were only a fraction of what hers were. By this time it felt like this whole thing was my fault and I couldn’t bare the thought of her paying the lion’s share of IVF because of my “undesired genes.” IVF was our plan, but we were waiting for a better time to execute it. That’s when we accidently (drunkenly) got pregnant again.
Imagine my shock, wheeling through Value Village looking for an outfit for my upcoming birthday when I get a text which is just a picture of a positive pregnancy test. I knew I was supposed to feel excited by this opportunity but all I felt was dread. The memory of holding Stuart in my arms came rushing back and in no way did I ever want to go through that again. I feigned an excited text and told Jolene I would be home right away.
When I got home we embraced in excitement but as I sat down I knew what I wanted to do. I didn’t want to go through the testing, the waiting, the anxiety and fear, or any of it. I would have preferred skipping all of that and terminating the pregnancy as early as possible. I had convinced myself that I was an unlucky person, and there was no way that this would turn out well. However, I didn’t express this, as it wasn’t my choice to make. I expressed my concerns, and asked Jolene what she wanted to do next.
She suggested rather than get emotionally invested, we should not tell anyone that we didn’t absolutely have to tell. When the time came to make a decision if the results were the same as with Stuart, we had the option of a D&C. We wouldn’t be able to meet our child but we wouldn’t have to traumatize ourselves all over again. This is what she wanted and I was behind her to support her every step of the way.
To say it felt weird to keep all of this a secret from friends and family would be an understatement. All that I could do was hope that the odds were in our favour this time. It was a fifty fifty chance with Stuart, what are the odds we would end up in the same spot again? Well, if you ask a 5th grade math teacher they can tell you, the odds are still fifty fifty, nothing changes. Unless you have good luck, which I don’t. Again we went through the anxiety of getting the testing done and hoping Jolene wouldn’t miscarry. Again, I waited by my phone for the result. Again, I hit the end call button with tears streaming down my face.
This time around we handled it so medically, so detached and most of all so cold. We had the appointment booked and I wanted to say “wait, but what if we didn’t do this…” Instead I packed my laptop so I could get some work done while I was waiting for Jolene to finish her appointment. On November 16 2016 we named our son Everett Moon. After losing Stuart I had introduced Jolene to one of my favourite sad bastard bands the EELS, fronted by Mark Everett. They sing hauntingly sad songs in a way that makes you feel like everything is going to be alright. As well, after Stuart I had gotten a waning moon tattooed on my bicep, Jolene thought it seemed an appropriate addition to his name and I didn’t disagree.
These decisions weighed heavily on me. I felt as though I hadn’t prepared myself properly for the situation at all. I now understand what effect disassociation from the disability community had. In an effort to be seen as more than my disability, I grew to increasingly hate all aspects of it. I felt like it had brought only pain, misery and grief into my life and that I would do anything to spare my future child the same. I didn’t realize that by making these decisions I was further lowering my own self worth. If I thought that embryos who would have disability like me could be not viable, then why did I think my life was? With each loss, a part of me died. Though at the time I didn’t have the vocabulary, or know the history behind it, I was playing an active role in Eugenics myself. I had bought the lie of the inferiority of life with disability, and could feel the blood on my hands.
A couple of weeks after saying goodbye to Everett, Jolene left for a trip to Paris. Something she had planned shortly after finding out about the pregnancy. I couldn’t join her because I had used up all of my holidays at work for appointments for IVF and Everett. I was jealous and lost in a lot of my own emotions. I felt extremely alone. I was dealing with a lot of self-hatred and feeling like life was just unfair. I had put myself in this place, I should have left the relationship when I had to compromise myself to stay in it. I shouldn’t have allowed myself to gamble with the odds of genetic inheritance like I had. I found myself beginning an inappropriate text based relationship with someone I knew. I was looking for a connection and I found it. It didn’t end up lasting long, and never evolved into anything physical. Because it was only through a screen it didn’t seem like it was “real,” but it was real enough.
Jolene came back with all sorts of worldly stories and gifts. Meanwhile, I was still burdened with guilt, shame and jealousy. I tried my best to move beyond it and start to build back to a point where we could think about next steps on our journey to starting our family. We had some appointments with the same counselor we had after Stuart, which helped. The recurring encouragement was to keep on our journey and that maybe by having a child we could begin to truly heal. So that’s what we did. Jolene would dip into some of her savings, and I was fortunate enough to have my parents offer to help significantly with the cost of trying IVF again.
We found ourselves getting off the elevator and into the same fertility office in Toronto a year after our last failed attempt. This time however things were different. Did we actually stumble upon a bit of good luck? After enduring the same torturous routine Jolene went through previously this time we had three viable (shudder) embryos. This time the first one took and we were again off to the races. This time we didn’t have to worry about the increased chances of miscarriage that the prenatal testing brought. We didn’t have to worry about waiting for test results to start telling our close friends either. I even went all out making a social media announcement post. A record is spinning on a turntable, but the sound of the doppler heart beat is playing instead of music, and then the words “RELEASE DATE” with the due date comes up on the screen. Then the piece de resistance: as the album stopped spinning, the middle of the record was the ultrasound picture. Everyone we knew were just as excited as we were.
I started taking pictures every week of Jolene’s belly as it grew so I could stitch them together into a cute little video when we got to finally meet our little person. We started the process of changing our spare room into a nursery. We met with one of Jolene’s coworker’s partner’s who volunteered to help modify their old crib to make it more accessible for me. This was finally really happening. It felt real.
At just shy of 23 weeks, Jolene had been having some slight hip/back aches for a little while and went to a naturopath that someone had recommended. She was hoping to see if there were any stretches or anything to help relieve what she was feeling. She assured me it was nothing major. She had a small adjustment done and afterwards found it helpful. We went on about our business as usual.
A couple of days later Jolene wasn’t feeling the best and decided she was going to take a bath. About a half an hour after she disappeared into the bathroom she called for me. I thought maybe she wanted me to bring some water or tea, but when I entered the bathroom I knew right away something wasn’t right. You know that look people give you when you can tell they are trying to keep their composure so you don’t lose yours? That was in full effect. She told me that she was pretty sure she had started to have contractions, and the midwife had suggested we go into the hospital to get things checked out. We just lived a short five minute door-to-door drive away so off we went.
I had an awful feeling as we entered the hospital. Flashbacks of going down the same hallways that led us to saying goodbye first to Stuart and then Everett. They rushed us into a private room and the staff quickly began triaging the situation. It felt like an eternity but was likely less than an hour before we knew for sure that Jolene was definitely in labour. So many things happened so fast. First they tried to stop/stall the labour with drugs and while that was taking effect they tackled the next issue. The baby was facing the wrong way so they then rushed us into an operating room. A doctor with support of a nursing team was able to successfully turn our little person around – a feat I was told was extremely hard to pull off. The next urgent matter was getting a drug into the baby’s system to help prepare their lungs to get to work early. As the drugs to stall the labour took hold, Jolene was going to try and rest a little, which left me call our families.
The first thing I did when I left the OR was completely break down and start bawling. Our midwife did an excellent job of consoling me and talking me down to where I could actually talk again. She shuffled me off into a room which wasn’t being used where I could privately break down repeatedly while I called our families. I called Jolene’s parents first and before I was even off the call her Stepmother was on the way. My next call was to my folks, who were already in Florida for the winter. Without hesitation my mother was booked on the next plane back. My dad had to stay back and wait for a new trailer to be delivered the next day. After I hung up my phone I took the biggest breath in and slowly exhaled to collect my wits to go back into the OR to rejoin Jolene.
Things quieted down and remained that way which meant they could move us into a private delivery room which was close to an operating/delivering room connected to the neonatal intensive care unit (NICU). This was happening and all we could do was buckle up and hope for the best. By this point it was the middle of the night and they told us to try and get some rest when and however we could. Jolene was worn out from everything her body had just gone through and I laid on a couch next to her. The only thing harder than trying to sleep while waiting to be called in for Stuart’s induction was trying to sleep on that couch knowing there was absolutely nothing I could do.
I could go into great detail about everything that happened over the twenty some odd hours between getting to the hospital until active labour started but I am going to keep this next part to the basics. Jolene’s stepmom arrived first and took care of the dog and cat back at home before coming up to see us. When things did start to happen, they happened fast. We were ushered into the OR, and not long after our son Jonas Christopher was born on October 27 2017. He was quickly whisked off to a waiting team of NICU staff in the connected room. While we waited to hear about his status we loudly blasted My Name is Jonas by Weezer a couple of times on my phone.
Eventually one of the nurses came over to tell us that Jonas was stable enough for the moment and invited me to go in and meet him. I left Jolene for a moment with her stepmother and midwife, grabbing my phone so I could take as many pictures as I could to take back and share with them. He was so tiny, wearing a little toque. His body was covered in sensors with wires and tubes coming and going everywhere. All that mattered in that moment was that my son was alive and I could hold his hand and be with him for that moment. I took it all in. I couldn’t help but feel nostalgic for a second remembering all of the times I had lain under the kinds of bright lights with tubes and wires everywhere as well. An experience we could share. I snapped back into the moment, captured a few pictures, and rushed back to Jolene’s side to share the first pictures of our son. They rushed Jonas off for more tests and observation, but would get back to us as soon as they had news to share.
Unfortunately it took some time for the doctor to make a decision around an issue Jolene was having and we were left waiting in the OR for a while. When they finally made a decision, Jolene’s support team and I were ushered out of the room so they could operate and I found myself back in our private delivery room uncertain about the health of my partner or my son. That soon changed.
A doctor from the team of NICU specialists came in to tell me that Jonas was on life support, that he had sustained multiple injuries during his birth and had substantial internal bleeding and would not survive. I was devastated and was still worried about Jolene. On top of that I now had the impossible task of telling her this news as well. I sat in our room with Jolene’s step mom while our midwife anxiously ran from nurse to nurse asking for updates. Eventually word came that everything was fine and we could go see her. I didn’t know what to say, after everything we had been through together, how was I supposed to completely break her heart.
As I stood beside her bed and took her hand, she opened her eyes and looked directly in mine and in that moment she knew. I tried to find the words to tell her what the doctor had just told me. I took a deep breath, tears running down my face, I shook my head and started “Jonas… he is just too small… there is too much internal…” and that’s when my voice locked up. I couldn’t even form the words, they were there, just in the back of my throat, but my body wouldn’t let me bring them out. I looked at our wonderful midwife and she stepped in as I stood there holding Jolene. Both of us weeping.
Not long after, when they deemed Jolene well enough, we were taken to go be with our son. We took turns holding him. Holding him. Crying in disbelief that this was where we found ourselves. My mother had made it to the airport and was about an hour away riding shotgun as my sister drove down the 401. They both eventually made it to the hospital and got to meet and hold Jonas and to be there with us for some time. It was nice to be together as a family, if only for a moment.
After a while we were alone, just the three of us. To this day when I think about it, I can still feel the weight of him in my arms. We took turns holding him, giving him all of the love we had for him. Letting him know we were there with him. Eventually the time did come where we were faced with making the impossible decision of having to take him off of life support. He died peacefully in his mothers arms while his father held his hand.
When we were released from the hospital the next day, our loving friends and family were there to take us into their arms. Over the next couple of months they were never too far away to be there to be there with us, to lift us up and carry us through some dark days. We laughed, cried and shared wine together. There was even one ridiculous moment where I was in a panic trying to find a freezer on kijiji to accommodate all of the food we were being given.
A statistic that is rarely talked about is that the rates of separation after a loss like ours are extremely high and that doesn’t factor in our other losses. Just four months after saying goodbye to Jonas our relationship blew up in epic proportions. We tried to do what was popular at the time by trying to consciously uncouple. We started to go to couples counseling to help navigate the complex grief associated with our relationship. It didn’t work however, I was soon asking Jolene to stop dragging her feet so we could sign a separation agreement and just be done with it all. It wasn’t until a year later that I found out she had been having an affair with my best friend for over a year before the relationship blew up. What added salt to the wound there was that we often referred to my friend as the “able-bodied version” of me. In the end Jolene had gotten what she wanted and I got out of an ableist relationship. On the bright side, I got to keep Pogue (the dog).
Before things got bad with the separation and while we were still going to couples therapy, we had started to attend a grief group specifically for infant and pregnancy loss. It was put on by the local group Bereaved Families of Ontario – Southwest Region. There were two other couples and a couple of folks who came on their own, all of whom coming from different situations. Some just weeks out from their loss, some were years out. However, we all came together because of our shared tragic experience.
Unfortunately I was rather lost in things breaking down with Jolene and I found myself distracted at times by that. She had asked that I not bring it up during these group sessions and I respected that until the last one. When it was my time to share I broke down bawling (which is not out of the norm for groups like these) and explained that I was grieving the losses of our children while also trying to grieve the loss of our relationship. When the session was done I just got up and left, without getting anyone’s number or contact information. Shortly after losing Jonas a counselor had recommended the “Grief Recovery Handbook” to me, which I had at home, so naturally I thought I was good. What transpired over the next couple of years was not pretty.
WAKE UP
How the fuck did I get to this point? I was a hot mess. Whenever anyone asked how I was doing my answer was always “I am doing ok,” but we both knew that was a lie. It took me getting sober in 2020 to really start to piece a lot of this story together. Slowly connecting the dots, making the connections I hadn’t been able to see before.
My relationship with alcohol was never a healthy one. My family has always enjoyed sharing countless beverages when we came together and so it was always around. There had been a few family members who had struggled with their drinking but I only found that out much later. The biggest eureka moment came when I put a few key moments in my life together, and realized how they lined up to set me on the path that led me here.
First was the shift from being a camper to becoming a counselor. Yes, it allowed me a lot of independence and the ability to be of service to an organization that had given me a lot during my youth. This transition however removed me from my peer group who helped me add context and understanding to life with disability. Sure, I was still in their company, but being staff at camp led me to make stronger bonds with non disabled folks and, at times, made me feel like I needed to prove why I was different from the campers. There was a lot of negativity surrounding my identity with disability and, more specifically, a lot of grief. Not only grief brought on by friends losing their lives due to complications brought on by disability, but the grief of being excluded from aspects of social life because of my disability. This fractured the perception of who I was and pushed me to disassociate from the community and my identity. If my new non disabled peer group could see me as “less disabled” then I was able to move further away from having to deal with this grief.
Second, with Osteogenesis Imperfecta something strange happens as you reach adolescence – your rates of fracturing drop off as you stop growing. Not only was I not breaking bones all the time, but I was also not having to get my rods replaced which meant no more surgeries. What transpired was a 20 year stretch without any major breaks or surgeries, allowing me to live a social life without any major disability flare ups.
Third, booze. With trying to be seen as less disabled came a tremendous amount of social anxiety. Drinking turned out to help out in a couple of different ways. It helped me feel like I was blending in when I would go drinking with my friends. Being 4’2” and going drink for drink with my friends who were much bigger than me never ended well. Puking, blacking out, and passing out were a common occurrence. Not only did drinking act as a way to fit in, but it also took the edge off of the social anxiety of trying to do so as well. This would come around to get me in the end.
During my drinking days I adopted a lot of ableist views and I started to gather a tremendous amount of internalized ableism. I really would try to distance myself from other people with disabilities in hopes of not having to deal with my own. By the time Jolene came into my life I didn’t see any value in a life with disability and because I compartmentalized my identity, I hated the part of me that I saw as being disabled. This was where I was coming from when I was making decisions about the viability of embryos. By the time I started to realize the gravity of my situation I didn’t have anyone around me to talk to about it. So I turned to a bottle. I didn’t want to live but at the same time I was far too afraid of dying.
In the end I drank to numb all of these feelings. I drank so much that when I didn’t have alcohol in my system the anxiety and depression crashed over me in a horribly overwhelming way. I still remember days where I would pour myself a shot of whisky because the thought of drying out was just too scary. I would cry while I filled a shot glass, not wanting to continue drinking, but also not wanting to feel what I felt. I knew I had a problem. I would try quitting multiple times, but it would never stick. I would get a week in and convince myself I had it under control then just find myself back in the same situation. Luckily enough I had a couple of close friends who would talk to me about their sobriety and their experiences with the secret society known as Alcoholics Anonymous. Being active in AA has helped me stay stopped.
The biggest problem I found once I got sober and didn’t have my crutch alcohol any more was that I had to find ways to actually work on my problems. I had hoped for too long that time would just magically heal all my wounds and solve all my problems. Turns out nothing happens if you don’t put the work into it yourself. The rooms of AA were a big help – I found a particular secular group (none of the God/Higher Power talk) I still go to today and chair the Tuesday night meeting for. If you are looking for a meeting, get in touch with me and I will give you the details. One thing that folks say a lot in that meeting is “the opposite of addiction is connection.” I slowly began to understand how talking to another person with a shared life experience can provide insight and context to your own thoughts, feelings and emotions.
Around the time of this realization I got an email from the same bereavement organization who put on the sessions I had attended with Jolene. Due to the pandemic, they were now offering online sessions and the Men’s Grief Support Group was calling my name. At the end of a few months of meeting I was asked to provide some feedback. I ended up writing a mini essay which they later published on their website. I figured I would just use a quotation from that to summarize my experience of the group.
“I had experienced first hand the lack of support and stereotypes most men are forced into in our society. “Man up, sit down. Chin up, pipe down. Socks up, don’t cry. Drink up, just lie.” It is largely still a taboo for us to talk about or question gender roles when it comes to grief. It is a burden which is assumed we must carry alone.
Finding myself in a place where I was trying to be proactive in bettering my mental health, I knew I needed to speak with other men about their own journey’s of grief. Even though I didn’t find that I was currently in a bad place or in crisis, I also wanted to help foster and support a much needed community.
Our co-facilitators were great at guiding us through introductions and sharing the stories which brought us together. Offering support and guidance along the way. I have found that being able to give my grief space outside of my own mind very helpful.
Hearing how other people have and continue to navigate their individual grief allows me to add context to my own story.
I can better understand my thoughts and emotions as they present themselves.
Whoa, heavy, right?
Simply put, family and friends mean a lot to me. However, there are some things I have been through in this life that they do not fully understand. Which is no fault of their own, it is because they haven’t had to deal with it in their lives.
I knew going into this support group that it would be a safe and open space for people to share and understand each other.
I was not disappointed. Hearing our stories of sadness, frustration, anger and how life goes on if we are ready or not, gave me the continuing encouragement I need to be a better and stronger me.
I want to thank everyone involved in making it happen, as I feel we are all better for it.”
The last missing piece of the puzzle, and the biggest piece, was disability. Though the rooms of AA have been helpful, they could also be horribly ableist spaces as well. Rarely was I ever in a meeting with someone who identified as a person with disability. I knew of meetings that were LGBTQ2+ friendly, meetings that were for women, there were even meetings for bikers, but I couldn’t find a single disability centered meeting. What I did find eventually was a facebook group called “Disabled & sober / sober curious people” (that is what it is still called today if you are wanting to find it), and it opened my world up in countless ways. I found out firsthand just how bad meetings can be for disabled and neurodiverse folks. I heard other people share about the connections between their substance use and life with disability. Most of all I heard a little part of myself in everyone else’s story. This was really the last piece of the puzzle that let me see the bigger picture, not just understanding what I had gone through, but how I might also move forward.
Enough with the fucking rockets already
In my drinking days I would occasionally get into big blow out arguments with people, but none of them were as big or as bad as the ones I would get into with my father. During a particularly brutal one just months before I got sober, I remember challenging him on some of his ableist views. Talk about the pot calling the kettle black. He threw it back in my face with the obvious reply “well if you actually feel so strongly about it why don’t you ACTUALLY do something about it.” The sad drunken reality of it was that I realized I was a hypocrite. I had started to stumble down a disability advocacy path but knew I was the worst example of what an advocate should be. You know, an advocate should actually see the value and potential in life with a disability. I have spent the last number of pages rambling on about just where I was at with that, I thought it was impossible to figure it all out. But that was drunk me with a ton of other baggage hanging on.
The more I connected with folks in the facebook group, the more I connected with the broader disability community that existed on social media. Much like my old camp days, folks started introducing me to articles, podcasts, books and movies. I consumed them ravenously. I wanted to figure out how other people could have dreams of bright Disability Justice Futures, and like what the fuck did that even mean anyway. I have always been a slow reader, I have long assumed I may have undiagnosed dyslexia. But over these last two years of sobriety I have read more disability literature than I have read any books during the decade before. I have even taken to reading some particular books to process my new disability perspective. I was shocked when I got around to reading the Origins of Satan and then a book written by an Italian exorcist how much I could relate to through disability and recovery (again once you look past the religious judgment).
Looking back now I can see where I went wrong – I lost touch with Josh. Not just Josh, but everything that I loved about our relationship. I regret not being able to apologize to him for becoming the person I did, and worse, for not being able to find the simple words that captured how much he meant to me before he passed. Regrettably, I can not change that, or any of the choices I have made in my past. What I can do is try my best to learn from those experiences. There is a gentleman in the meeting that I chair who will often say “no person is ever truly useless, they can always serve as a bad example.” So here is my story laid bare, so that we might be able to make some changes in this mixed up backwards world.
Disability isn’t inherently bad, it is society’s view of it that is. We have come a long way from the stone age. The leaps and bounds we have made in the medical world are astonishing. If you make enough money you can literally build your own dick shaped rocket and fly it into outer space (you would think Jeff Bezo could probably afford to pay his workers a little better). In a world so abundant in resources, why do we continue to devalue and oppress people for something they can’t change?
Isn’t this what fascism looks like? The thing that the Nazi’s didn’t realize was that you can never have a society completely free of disability. After you exterminate an entire population, people will continue to acquire disability in any number of ways.
There are two main factors that continue to cause the community of people who identify as having disability to grow: Environment and Aging. Global pandemics and climate change are only going to get worse as time moves on. Not only was COVID particularly worse for anyone with a disability, but it also has left millions of people with lasting physical and cognitive effects from their infection. The pollutants we put into the air, soil and water are proving to have lasting effects on our environment and our bodies. The geographic area I am writing this in has the highest percentage of heart disease and cancer. It is also located 45 minutes away from a place lovingly called Chemical Valley. Not to mention disability acquired from storms and wildfires which continue to grow in severity.
A fun fact that many people who currently do not have a disability are unaware of is that the only way not to acquire a disability in your life is to die before you do. It’s just the facts. I could list any number of disabilities that are more prevalent in the population of people over 55, but this essay has really already gone on long enough already. Why does it seem we are so hell bent on maintaining this status quo that people with disabilities are inferior? The disabled community holds a great wealth of shared knowledge. We have had to navigate systems which were not designed with our existence as a consideration. The fact that we still exist and often thrive in the most unique ways speaks volumes. With the pandemic we have found new ways to make tighter connections online to share information and compassion. We should shift the way society views disability and open up to the ways in which we need to start listening to the new generation of disability doulas. Wait, what?
Disability doula is a term I recently learned from Leah Lakshmi Piepzna-Samarasinha’s book The Future is Disabled, and it is exactly as it sounds. It is someone who assists in the transition when someone acquires disability. Something else that I have learned from her writing, as well as many others, is just how rich and diverse the disability community is. Folks with disability are a creative group of individuals who have had to learn to not rely on systems that have continually failed us. We have notebooks, blogs, text messages, emails and wherever else you store knowledge full of life hacks. We become natural problem solvers from having to do everything on our own outside the extremely limited resources the system offers us. I once had a laugh with a case worker of mine who suggested I duct tape my mobility device back together while I wait for government funding. We laughed because this wasn’t the first time either of us had heard or said something like this.
We need to stop building dick shaped rockets, giving tax cuts to billionaires, destroying environmentally protected spaces, relying so heavily on single use products that just end up in our oceans and land fills, and start investing in our social and healthcare systems. It’s so common sense to say but we are so focused on and busy putting bandaids on things, we haven’t stopped to think about how to fix the bigger problems. Our systems are not broken, they are operating exactly how they were designed to, to benefit rich old white men. Maybe the first step in the right direction is to stop seeing disability as the problem and see the changes we need to make in the world around us.
I keep the boxes which contain the ashes of Stuart and Jonas on a book shelf at the foot of my bed. They were symbols of the pain and misery I went through but now they serve as reminders of the future I want to be a part of. The future I am now trying to help foster and create. A place for people with disabilities to live and to live a life free from the shame others push onto them.
“As the people of Akwesasne know, the real measure of a community is determined not so much by the independence of its members as by the extent to which INTERDEPENDENCE has meaning for each individual living there.” From the book TE-WA-KWE-KON: Together As One.
The cover photo was taken on the one year anniversary of losing Jonas. I am not exactly sure why I took, or even kept the selfie until I started writing this essay. Ugly crying my face off. Laying flat on my back on my new roomate’s townhouse floor. Newly separated and struggling to understand how this affected the grief and connection I have for my boys. Listening to My Name is Jonas on my record player repeatedly. DRUNK. I would like to say this was my rock bottom, but as you have just read, it wasn’t. The Adam on the cover is not the same Adam that wrote this essay. I have my family and friends to thank for that. Thank you. Each and every single one of you.
Peace, Love & Understanding.
Adam & Pogue (the dog)
