What Does Disability Look Like?
What Does Disability Look Like?
How is disability experienced by those living with it?
Definitions:
Impairment is a medical issue that impacts a person’s functional ability. With understanding and accommodating support a functional impairment does not have to become a disabiity or result in a costly disabling outcome.
Disability is an economic and vocational issue related to the ways functional impairment is made to prevent participation in economic, vocational and social activities through discriminatory attitudes and physical barriers.
Eugenics is the belief that human character is entirely genetic, unaffected by education or living conditions and that on the basis of their appearance or functional limitations some human beings are undesirable and not fully human and should be confined or eliminated for the benefit of society.
Ableism is a type of oppression based on a dehumanizing bias against people with impairments rooted in eugenics and the assumption that able-bodied people are superior and that disabled people require unnecessarily costly ‘fixing’ and are an undue burden on educators, employers and society.
Visible disability is a disabling impairment that is visibly apparent through differences in body structure or through the use of an assistive device such as a wheelchair, walker, crutches, prosthetics, white cane, hearing aids, sign language or registered service animal.
Invisible disability is a disabling physical, mental or neurological impairment that is not visible from the outside.
Introduction
My name is Robert Melanson, I was born in Toronto, Ontario, Canada with a severe form of asthma and congenital spinal stenosis. I grew up in a number of Catholic foster “care” group homes, area hospitals, and a disabled children’s rehabilitation center formerly known as the Ontario Crippled Children's Center. Today my invisible impairments include severe eosinophilic asthma and complex post-traumatic stress disorder. My visible impairments are spinal stenosis and functional neurological disorder with loss of right-side upper and bilateral lower motor control.
Visible and invisible impairments create different kinds of social experiences. As someone who lives with both kinds of disability, in this article, I am going to share how each has impacted my life.
Severe Eosinophilic Asthma (SEA)
Severe Eosinophilic Asthma is a life-threatening type of asthma that is caused by high levels of white blood cells called eosinophils in the airways of the lungs. The purpose of these white blood cells is to help you fight infections. In SEA these immune cells overreact to allergens causing pulmonary inflammation and respiratory distress or arrest that can be fatal if not treated.
Severe Eosinophilic Asthma (SEA)
The impact of SEA on my life has been lost productivity in school or work due to frequent hospitalizations, limited or lost employment opportunities, and the creation of severe restrictions on my social life. SEA has also contributed to psychiatric distress and PTSD following a number of poorly supported life-threatening episodes. Because the primary means of controlling my SEA is avoidance of triggers my work and social opportunities are sharply restricted. Any activity, job, or relationship that requires me to be in contact with triggers is not safe or possible.
This has meant that I’ve had to get off elevators, busses, trains, and aircraft or leave job sites, places of residence, and social events when a dog or other trigger is introduced into my environment. Ableist attitudes and lack of respect have made living with this disability much more difficult and have contributed to significant losses and harm. For example, my SEA has been weaponized against me by coworkers who bring dogs to work to force me to leave so they can take my position and my ex-wife bought a dog to push me out of my children’s lives and make me sick so I couldn't fight back.
Ableism has featured prominently in my employment instability and social isolation. On the job when faced with environmental triggers and exclusion, I have been asked many times to just deal with it or not to rock the boat and have been reassigned from jobs I was good at and enjoyed to duties that were not appropriate to my abilities and harmed my career trajectory. During my separation when informed of intentional medical interference with my joint custody, the judge did not care about my medical needs or disability rights and was very direct in telling me my disability was my problem to solve.
Without legal enforcement of human rights and disability inclusion laws I sought extreme measures to keep a relationship with my children (who are my only family) so I accepted a risky biological treatment where monoclonal mouse antibodies were injected into my body to stop the production of IL-5 immune factor related to my SEA. The treatment failed, I developed temporary heart failure blew up like a balloon, rapidly gained 200 pounds, and developed diabetes. Because the courts are not fully accessible I am now almost completely estranged from my children and am now facing painful medical decompensation in isolation.
The social and emotional aspects of living with SEA are especially difficult. I’ve been told off so many times I don’t even ask strangers who smoke or bring dogs into my environment to stop smoking or remove the dog so I can stay anymore I just leave quietly and accept that it’s my problem and I simply don’t belong. It’s not worth the risk of conflict and the law is clearly not on my side. The easiest solution is always for me to leave or deal with my problem myself which has not been good for my emotional well-being.
Complex Post Traumatic Stress Disorder
Complex post-traumatic stress disorder (complex PTSD) is a severe psychobiological injury where adrenergic overstimulation of the central nervous system and limbic brain structures results in injury or damage to neural structures involved in the human stress response. CPTSD emerges in response to sustained or multiple exposures to psychological trauma, such as childhood neglect/abuse, domestic or community violence or exposure to repeated life-threatening illness/injury.
Complex post-traumatic stress disorder (CPTSD)
CPTSD has been the most challenging and painful of my disabilities by a huge margin. Living with CPTSD has meant taking a lot of time alone behind closed doors to deal with symptoms or come up with more socially acceptable excuses so I can pretend to be normal around others and not be judged or targeted. My CPTSD is a result of early neglect combined with life-threatening illness, foster and institutional “care”, and unresolved domestic violence.
Constantly trying to hide or avoid the below symptoms is exhausting and my symptoms create impairments that are severely disabling.
Reliving the Trauma - My experience is marked by disturbing or frightening dreams 2-3 nights a week and emotional flashbacks several times a month. When I have flashbacks it’s usually a sudden experience of extreme emotion usually intense fear or extreme sadness that is inconsistent with what is happening around me. Sometimes I have very brief visual or auditory hallucinations where I see myself trapped or dying or hear hospital sounds. I find myself constantly trying to avoid stressful situations or things associated with my trauma as these trigger flashbacks and other distressing symptoms.
Difficulty controlling emotions - I sometimes struggle to maintain control over my emotions or experience emotions more strongly than warranted by the situation. To control this I avoid social exposure, seek solitude and hide or shut down and sleep. When I can’t avoid the issue I expend a massive amount of energy to deny and repress what I am feeling.
Negative self-view - I have a very difficult time seeing myself as a worthy or likable person despite having significant reasons to like and respect my positive accomplishments and contributions to others as a counselor and support figure. I frequently feel broken, helpless, deeply ashamed, and completely different from other people.
Difficulty with relationships - I have spent much of my life alone in solitude. I was married to an entitled princess for 15 years in a loveless and domestically abusive relationship while I tried desperately to fake being normal so I could have a family. Though I want to belong and share meaningful caring relationships with others more than anything and have extensively studied and practiced the boundaries and participation required for healthy personal and professional relationships I have long struggled with repeatedly unhealthy relationships that bring loss and harm. Though I have taken a break from a normal life of working and dating I would give almost anything to have mutually healthy personal and professional relationships. Relative poverty and profound loneliness have been major issues related to CPTSD.
Hopelessness – Given my repeated failures and relentless loneliness I frequently feel hopeless that I’ll ever recover or that life will ever get better. At its worse, this contributes to extreme emotional pain and deeply disturbing suicidal ideations. When this happens I shut down and sleep. Sometimes being fully conscious is just too unbearable so “hibernation” is the only accessible and reasonable alternative to suicide.
Detachment from the trauma - While I understand why my psyche needs to disconnect from my reality (depersonalization) and the world around me (derealisation), the dissociative features of my CPTSD are a very disruptive and distressing experience that interferes with my ability to enjoy the normal activities of living causing me deep emotional distress.
Problems with self-esteem - Given my life experience of navigating repeated traumatic injuries and losses without support or guidance I blame myself and believe bad things happen because of something in me. I sometimes feel that I am cursed.
Conversion - Sometimes my psychological distress is so severe I have physical symptoms like paraplegia where I lose bowel and bladder control collapse and literally can not control any part of my body below the waist.
These symptoms adversely impacted my career because no matter what I’m doing I have to drop it and run to hide and manage them. As you might imagine, as a professional counselor this makes networking or working with clients exceedingly difficult. I’ll be fine one minute and the next I’m a wreck overwhelmed and frozen by intense emotions as if I was under an actual lethal attack at that very moment. While it may not look like anything is wrong to those around me, in my perception, the threat to my life is as real as the day it actually happened. It’s horrible in ways I can’t effectively communicate with others which leaves me feeling deeply embarrassed, ashamed, isolated, vulnerable and hopeless.
The biggest and by far most painful challenge that came with CPTSD is the impact it has had on my sense of masculinity. When CPTSD cost me my career in child protective services I was despondent and suicidal. I was newly married we had just bought our first house and were trying to start a family. I felt that I had failed as a husband and man. With no father or family to support me through this difficulty, I didn’t navigate it well. My marriage became increasingly abusive and the more I tried to man up to be the man my wife deserved the worse I felt about myself, the worse my symptoms became and the more my professional life suffered. Having grown up without a family I’ve never wanted anything more than to have a family to belong to. My failure to man up and be the provider and protector demanded of me as a family man has been a major source of internalized shame. I have found myself asking hidden away through tears over and over again “am I useless garbage” “does a man who can’t provide deserve to live?” “does he deserve to be loved and accepted?”
Spinal Stenosis and Paralysis
Spinal stenosis happens when the spaces in the spine narrow and create pressure on the spinal cord and nerve roots.
Paraplegia following post-traumatic thoracic spinal stenosis
My issues with spinal stenosis and paralysis are a much more recent development. Being new to life in a wheelchair has provided me with a perspective I did not fully appreciate as a support professional. While I understood from book learning and patient care how discriminatory attitudes, exclusionary design and physical barriers could impact a person’s quality of life, actually living in a wheelchair has introduced me to a whole new life experience marked by time-consuming frustration and inconvenience.
Since I no longer drive and have no family support I have had to adjust to how grossly inadequate public mobility transit is. It takes a tremendous amount of planning and time to go anywhere out of manual wheelchair range and I’ve found there are a surprising number of places I can no longer go because of physical barriers. For example, my local convenience store and favourite pizzeria do not have accessible doorways, not all social institutions like courthouses and universities are fully accessible and many places that are advertised as fully accessible turn out not to be when ramps or elevators are out of order or disability parking is severely limited and abused by people who shouldn’t be using it. Beyond the time and inconvenience factor what I notice most is how much more difficult simple daily tasks like personal hygiene, house chores, grocery shopping, and socializing have become. What I miss most since becoming wheelchair-bound is my freedom and autonomy. With only a manual wheelchair and no car or family support, I am finding myself confined and completely dependent on cost-prohibitive services to a very uncomfortable degree. I want to get out and meet other people in wheelchairs so I can learn how to live this lifestyle but it’s a tough one given my loss of autonomy and lack of support. I feel trapped and feel like life is just not livable like this.
On the positive side, the social experience of visible impairment has been far less negative than for my invisible impairments. Generally, I have found that people want to be helpful and inclusive of me when they see my wheelchair which is greatly contrasted by the abuse, neglect and predation I’ve suffered as a result of hidden disabilities. Seeing is believing so the biggest difference I’ve experienced between visible and invisible disability is in the degree of discrimination and oppression I’ve experienced. People seem to like and want to help the smiling guy in a wheelchair to the extent it's not a hardship but many people flat-out despise the “lazy” loser who looks able-bodied but can't keep a job because he’s supposedly crippled by an invisible disability. I can’t begin to tell you how incredibly idiotic and harmful this kind of social ignorance and ableism are.
The Individual and Social Cost of Ableism
Are 'ableist' economies depriving themselves of the purple pound?
I wasn’t born with this many impairments, many of my impairments are the result of institutional care, denial of medical treatment and poor access to justice. Unfortunately, classism and pervasive ableism means small inexpensive medical issues were left to fester and become much larger, more disabling and expensive medical issues. I’m not alone there are many other Canadians with similar experiences. Dangerous elitist and ableist attitudes among Canada’s legislators, jurists, doctors and corporate leadership have contributed to a significant cost burden that is now spilling over in ways that impact ordinary Canadians with a collapsing healthcare system and eroding social security net. With attitudinal correction and appropriate policy, small medical and legal issues could be corrected cheaply and with meaningful enforcement of human rights and disability inclusion laws and with support many Canadians currently written off and living in poverty on disability benefits could be working and contributing to Canadian society.
Impairment shouldn't need to become disabling and disability shouldn't leave Canadian citizens suffering in poverty with a choice between living in sub-human conditions or volunteering for euthanasia in a wealthy country like Canada.
In February 2023 facing the loss of my car and mobility I started "The Intersection" platform on Substack, FaceBook and YouTube as an attempt at finding meaning and purpose in life where I can use my hard-earned skills and unique knowledge base to advocate on behalf of all people living with disabilities and hopefully create some movement towards meaningful collective social change. I am also working on a book about surviving foster care and disability that I am looking to publish in the not-so-far-off future.
My hope with The Intersection is that people living with disability will send in their personal stories about what life in their shoes is like on a day-to-day basis. I want to create a testament to our collective struggles and triumphs to humanize us in the eyes of elitists and ableists in power to create social change so that we might one day be valued and fully included in society. If you are living with a disability and would like to share your experience please submit your story to theintersectionstories@gmail.com
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