Article: Looking "Too Good" To Have a Disability

This article was written by Michael Todaro, and originally appeared in DABC’s Transition magazine on Disability Justice (Spring 2022). Read the issue here.

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In the year that I was applying for my Persons with Disabilities (PWD) designation, I have to admit I did a lot of soul-searching. 

I knew I wouldn’t be taken seriously. Apparently, I looked great, as people never stopped telling me. 

”You don’t know how good you have it,” said one friend, and others told me it was “all in my head.”

The reality was I was lethargic, could barely walk or talk most days and, as a rule, I didn’t sleep. My pain levels were unbelievably high day and night. I was 20 pounds underweight, anxious, depressed and suffering from post-traumatic stress. The circles under my eyes were permanent and made me look like an unimpressed raccoon. I was dizzy all day long.

On the day of my appointment with the doctor who would evaluate me for PWD, I got dressed and tried to look my best. I had been taught that if you wanted to be taken seriously, you have to dress well, so I was determined to make the best impression I could.

Are you laughing yet?

Because my pain levels were so high that day, it took me three hours to get ready. The morning routine for a person living with chronic health issues can be debilitating. Taking a shower, washing hair, getting dressed— all of these things take time and energy and, when you have neither and are in chronic pain, it makes for a rough day.

On this day, I was proud of myself because, despite wave after wave of pain, I was able to get it together and even looked pretty good to boot! In retrospect, I guess I looked too good. “Dressing for success” clearly doesn’t work if, as a result, the doctor thinks you are faking your disability.

When I arrived at the doctor’s office, instead of his usual friendly self, he scowled at me from behind his desk. I waited, watching this change in his demeanour.

After staring at me a few minutes, he said in a rage, “How dare you come into my office looking that good and expect me to help you with your disability application!”

In spite of being a well-educated doctor who had treated me for 14 months, he thought I looked too good to have a disability. To be honest, I had not been interested before in displaying my disability. I had kept it hidden. So he was surprised when I stopped hiding it.

His behaviour was pretty shocking. But it’s something that people with less visible disabilities face every day.

It’s true that people can sometimes be cruel, but, if we are kept ignorant and unaware of the needs and experiences of others, how can we be expected to know what to do? As a group, people with disabilities will remain vulnerable where this kind of ignorance prevails.

I don’t believe the onus of responsibility for creating space for all people with disabilities lies with the uninformed public. It lies with the governing bodies and services we use. These are the organizations which have yet to champion legislation that supports and protects people with various types of disabilities.

Our signage on BC buses, for example, often reads like a suggestion: “Please remember who these seats are for.” I think this is misguided and, in my experience, not that effective because not every person or culture views disability with compassion. By comparison, a sign in the US reads, “Disabled use only, $300 fine.” A clear message with a clear consequence.

It is time for all of us to do better for people living with invisible disabilities. London, England has found one way to do it. If you need to sit down on public transit, you can order a button that identifies you as someone who needs a seat.

People are not asked to justify their disability to receive a button. An education campaign told the public they were expected to offer a seat to someone who wore the button. TransLink could easily spearhead a similar program here in BC.

This takes the burden off the person with a disability to explain, each time, why they need a seat! Not everyone is always up for or well enough to fight that tiring battle.

I think this is an excellent approach to dealing with invisible disabilities while traveling because it legitimizes a person’s needs in the minds of those who might find fault with them. This also helps to remove anger from the equation, and focuses on a sustainable solution for people who do not look like they have a disability.

For passengers with a disability who are often not believed or taken seriously, a small change in the way we do things in BC could ensure the safety of people with visible and invisible disabilities.

References

CDC: Lupus Symptoms https://www.cdc.gov/lupus/basics/symptoms.htm
Please Offer Me a Seat at the Transport for London government website: https://tfl.gov.uk/transport-accessibility/please-offer-me-a-seat

Michael Todaro is an editor, writer and instructor living in the Vancouver area.

Article - Dear Canadians: Please Care about Families like Mine

This article was written by Brenda Lenahan, and originally appeared in DABC’s Transition magazine on Disability Justice (Spring 2022). Read the issue here.

If you’re interested in contributing to Transition as an individual or an organization, please email transition@disabilityalliancebc.org.
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I am part of an invisible demographic. Yet, my son and I can’t leave the house without feeling noticed everywhere we go.

My seven-year-old son is defined in the medical world as a child with medical complexity. He is non-verbal, yet his smile will speak loudly to you. He is charming and silly, sensitive and loving. My son feels like my personal disruptor as well as my saviour from a life less lived.

He has introduced me to a world of love and beauty, as well as one of discrimination and injustice. He is disabled. Disabled by a world that is not designed for him and at times feels like it is actively trying to oppress and dismiss him.

Let me share a bit of this with you.

Despite the privilege I inherently have, I find myself struggling to provide for our basic needs, and I am not alone. Thousands of families like mine across this country struggle every single day.

Disability poverty starts at birth for many kids in our country. Families like mine live with a painful juxtaposition. We strive to save and plan for our children’s lives well beyond the age of 19, as they will always be fully dependent and need 24/7 assistance for their daily needs. In the same moment, we brace ourselves with the knowledge that they may not live to their next birthday. We routinely grieve alongside other parents and friends who have lost their children at very young ages.

Our kids certainly have a way of keeping it real and raw.

We live in a country and a society that is paying a lot of lip service these days to inclusion, diversity and disability equity. Yet, the financial burdens we bear are intense.

Families like mine don’t have access to income support that recognizes the 24/7 demands of our kids’ care and the barriers to employment that this creates.

The federal Child Disability Benefit is only around $240 per month and limited to families with the lowest incomes in Canada. Although this benefit was slated in 2019 to be doubled, we are still waiting.

The federal Liberals have put forward a plan to bring $10 a day child care to all Canadians. Why not plant disabled children’s needs at the forefront of policy discussions to ensure that this plan will truly be inclusive and equitable?

Let’s also hope the promised Canada Disability Benefit for working age Canadians with disabilities becomes a reality.

As a solo mom, I worry deeply about the future for my son and so have stepped up to put my energy into the collective voice for change. I was honoured to join the Leadership Team of Disability Without Poverty.

This movement needs all Canadians to care. Ask your local MP what concrete actions and policies they will put forward specific to children with disabilities.

We are on the doorstep of an extraordinary opportunity.

Building back with human rights as our guide, is the only chance we have to ensure that social equity is in our future.

For more information on this movement and ways to support it, see: https://www.disabilitywithoutpoverty.ca.

To find contact information for your MLA, see https://www.leg.bc.ca/learn-about-us/members/.

Brenda Lenahan and her son live on the west coast of Vancouver Island. She is the founder of BC Complex Kids and advocates for access to equitable supports for kids with medical complexity.

Article: What Does Disability Justice Mean to Me?

This article was written by Harmony Bongat, and originally appeared in DABC’s Transition magazine on Disability Justice (Spring 2022). Read the issue here.

If you’re interested in contributing to Transition as an individual or an organization, please email transition@disabilityalliancebc.org.  _________________________________________________________

I was introduced to Disability Justice through a friend a few years ago. I had just received a diagnosis of fibromyalgia and my visual impairments were worsening, as were my mental health issues.

I was stuck in a medical system that left me feeling hopeless. My circle of non-disabled friends didn’t understand what I was going through. My family minimized my anguish, inundating me with toxic positivity, telling me “I’d get through it” or “I’ll get better.” Everyone around me offered unsolicited advice. I felt confused, scared and lonely — I wasn’t being comforted or supported.

One day, I started attending a group support meeting called Chronically Queer and was introduced to the Disability Justice movement. To me, Disability Justice means: compassion, kindness, resilience and community.

An ableist society says, “You are not welcome.” Disability Justice says, “We want you here.”

Disability Justice understands that, as a disabled, queer, Filipino, solo parent, living in poverty, my experience as a person with a disability is different from the experiences of many other people with disabilities.

Within the medical system, for example, female, queer, people of colour are just not given the same standard of care as white, straight, cisgender men.

I minimize my emotions and mask or hide my queerness. I‘m often asked inappropriate questions or not taken seriously.

And, worst of all, I have no choice but to be entangled within this system. It’s disheartening and exhausting, and wears away at my dignity and self-worth.

But, within the Disability Justice movement, I am given back what the health system and other systems of care have taken away. It sees my lived experience as a wealth of knowledge that I can share knowing it will be valued.

Furthermore, people with disabilities who are not able to “sustain gainful employment” (their words), like myself, must undergo scrutiny in applying for financial assistance. I must show just how disabled I am by divulging details I know will be scrutinized without the compassion and empathy I need–all this, despite having doctors’ diagnoses of chronic conditions I will have for the rest of my life.

People with disabilities know that disability labels come with negative stigma, perpetuated by systems of oppression that all of us are living under. But in a room of people with disabilities, there is joy and comfort and excitement! Other people with disabilities just get it (get US), understand and sympathize. There is an air of excitement and community. We can work together for social change, and, at the same time, talk about everyday life.

We talk about movies where a character with a disability is a well-rounded person, not one that exists for the benefit of someone else. We play board games where everyone can participate, regardless of their level of functioning.

We try to meet everyone’s lighting, seating, scent and sound needs. We offer food or go to restaurants where everyone can eat, regardless of dietary restrictions, paying attention to how much meals cost. We know a lot of us have been through trauma, so we use content and trigger warnings before talking about difficult subjects.

Creating inclusion can be as easy as asking someone if they have what they need and, if they don’t, working with them to see how you can help — and giving that help in a way that doesn’t infantilize, shame or “other” them.

Within the Disability Justice movement, we purposefully engage with others and share what we learn about our conditions, symptom management techniques, self-care treatments, mental health resources and self-advocacy measures.

Disability Justice reminds us to take care of ourselves first. I am reminded that I don’t need to be at the front lines to be part of the movement. I want to know that I can make a difference and that I contribute whatever I can to fight ableism. Just existing each day as a person with a disability means that I’m doing enough.

Right now, one of my contributions is my story. I share it in the hope that it will be listened to and — right now — that is enough.

Chronically Queer is a support group for anyone who is 2SLGBTQIA+?; and who has a disability, chronic condition and/or mental health issue. Come and join us: https://www.canbc.org/queer/chronically-queer/.

Harmony Bongat is a disability justice advocate and educator through Creating Accessible Neighbourhoods (CAN), as well as a researcher of 2SLGBTQIA+ history.