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Meet A Crip Doula: Tired Of Lip Service, Heather McCain Takes Accessibility Into Their Own Hands

Updated: Dec 29, 2020

For Heather McCain, accessibility is about so much more than physical space.

BC Disability

For Heather McCain, Founder and Executive director of Creating Accessible Neighbourhoods (CAN), accessibility has many interlocking parts--including language use, sexuality, race, and even self-doubt. Their accessibility advocacy, as well as their leadership and support of other persons with disabilities, have earned them the honourary title 'Crip Doula'.

I talked with Heather about how they started CAN, how to unpack the layers and nuances of accessibility, and where they see their work heading in the future.

Spencer: What motivated you to start Creating Accessible Neighbourhoods?

Heather: I spent 5 years in my house dealing with health and mobility issues, and when I got a power wheelchair I was excited about the freedom I would have returning to the outside world.

What I discovered, however, was how inaccessible that world was. In particular, transit operators who acted as gatekeepers (creating artificial barriers to accessible services) were a big obstacle, and I couldn’t find any support from non-profits to help fight the issue, so I took action myself. I founded Creating Accessible Neighbourhoods with some members of my chronic pain group, we started advocating, and people started paying attention.

Transportation is how I got started and it has been a major focus of my work. One of my first advocacy victories was dealing with drivers who were gatekeeping, I have worked with TransLink as a consultant for 15 years, and consulted on various ride sharing services, including Uber and a scooter share program.

I also have a growing interest in educating people about imposter syndrome and intersecting identities, and have been focusing on this recently.

Spencer: What is imposter syndrome and how does it relate to disability?

Heather: My work with imposter syndrome started several years ago when I first started working on transpiration accessibility. I was in a consultation with TransLink, where I was the only person under 40, the only non-male, the only one without a university education, and there I was, sitting in a meeting with TransLink executives. I thought to myself 'what am I doing here? I don’t belong here'. Then one of them would say something incorrect about disabled people and I would jump in.

So imposter syndrome occurs when people think they have fooled others to get where they are and have not really earn their way there: 'I have disability, oh I must be a token hire'. The person starts using self-belittling language and goes into a downward spiral where they think they are not good enough.

Imposter syndrome occurs when people think they have fooled others to get where are and didn’t really earn way there: ' I have disability, oh I must be a token hire'

Another way this is tied to disability is that people with disabilities volunteer so much, but these efforts are not valued and acknowledged as much as paid work, which of course disabled persons often face barriers in obtaining.

What I recommend is writing down your accomplishments and talents, to read before working on projects or going into meetings. Not only does this feel good and enforce your worth, it gives you something quick to pull out and look at when you are self-doubting. If you just try to remember your strengths and achievements off the top of your head, it will always be more difficult.

Spencer: You also facilitate Chronically Queer, a support group for LGBTQ2SIA persons with chronic health conditions. How are things different if you are a queer disabled person?

Heather: There are events which are tied to membership within communities. For example, the Pride Parade is one of these events for the queer community, but the parade and many Pride events often are not fully accessible to disabled persons, which make it difficult for them to be a fully included member of the LGBTQ community.

Then you might have someone who is Black, queer, and disabled, who are from a demographic that has experienced violence by the police and therefore isn’t comfortable at Pride events or other public events with a police presence.

Another area where we see intersecting identities highlighted is in health care. Living with a disability brings you into contact with the medical system more than it does if you are non-disabled, and professionals in the medical system do not understand the experiences of those who are LGBTQ2SIA+, racialized, or both, which becomes a barrier to care.

Professionals in the medical system do not understand the experiences of those who are LGBTQ2SIA+, racialized, or both

All these factors accumulate and make things tougher, despite lip service paid to diversity and equity.

Spencer: One thing there has been talk about recently is the proposed provincial accessibility legislation. What do you make of that?

Heather: Let us be clear—disabled persons are not fighting for rights on paper; we already have plenty of those. What we want to see is real change that improves lived experiences day-to-day, week-to-week, and so on.

Disabled persons aren’t fighting for rights on paper....what we want to see is real change

As it stands, many of the rights in place and mechanisms meant to protect persons with disabilities are still inaccessible. In order to be heard, you still need significant money, time, energy, and a lot of things that make the processes inaccessible.

This means that to be effective, accessibility legislation needs low-barrier, navigable ways to issue complaints and raise awareness, to move ahead with the process, and to ultimately see a fair outcome. So far we don’t have that.

Legislation is a step forward, but enough of a step to make a difference in people’s lives, and for how long?

Spencer: Was the consultation process itself inclusive?

Heather: Not entirely. At the consultations I attended, there was a lack of signage, dietary issues weren’t probably dealt with, there was an overwhelming amount of info to read—but without any way for blind persons to read it.

But, most notably to me, there was no communication with us after the consultation—no updates or no new information or anything else. There is also the perpetual concern that, no matter who participated in the consultation process, the input will not be followed, and the legislation will move ahead with predetermined content and focuses.

That said, I do think the NDP government has done a much better job than the Liberal government did. The Liberals made a lot of changes that negatively impacted disabled people in BC.

Spencer: If you knew the government would do everything you recommended, what would you tell them?

Heather: Haha, oh a number of things!

Increase Disability Assistance and Close Loopholes: First, raise the PWD rates and close loopholes making it difficult to transition off. As it stands, PWD assistance does not allow the fulfillment of basic needs, and even COVID relief payments based on a bare minimum standard of living were significantly more than PWD is; how can you focus on things like employment or education when you can hardly even survive? And how do you think that is for someone's mental health?

And then if your earnings increase, you lose many of your subsidies, you may lose disability assistance outright, and there is no guarantee you’ll be able to get back on it. In effect, getting off disability assistance is costly and discourages financial success due to the risk.

Many of the loopholes which cause this are reflective of a system made by people who do not actually use that system.

How can you focus on employment when you can hardly even survive? How do you think that is for mental health?

A Different Kind of Accessibility: Accessibility has to go beyond physical accessibility, which is usually the overwhelming focus. But there are many important accessibility issues apart from this. There should be less use of fluorescent lights, greater efforts to make information accessible and understandable, and of course more consultation of disabled persons.

Equitable Education: There is not enough of a push to help disabled students thrive. Too often the system assumes that disabled students lack their own educational aspirations. There needs to be better communication between students, staff, and parents about goals and education plans.

More Proactive Support for Mental Health: All too often we end up paying more in the long run because we did not invest enough up front to prevent mental health situations in the first place. For example, if we paid for weekly counselling, we might keep someone from attempting suicide and ending up institutionalized. We also need to expand who is responding to these emergencies, so that it is not the police.

Recognize Disabled Persons as Economic Contributors: There is always this notion that disabled people take and do not give, but people with disabilities are the world's 3rd largest economic power after the USA and China. Further, disabled people are more likely than wealthier people to shop locally and keep money here.

This idea of disabled people as takers is based on misinformation and there needs to be education to correct these negatives beliefs and attitudes.

Spencer: Another issue related to accessibility and inclusion is language. What type of language do you use?

Heather: I use identity-first language ('disabled person' rather than 'person with a disability'), because I cannot separate disability from who I am, but there is no hard rule; each person's unique experiences will influence their choice of words.

I also use the term 'Crip'—but I do that while understanding that it is a word being reclaimed and some are uncomfortable with it. One term I have been called and that I am proud to use for myself is 'Crip Doula'—someone who helps disabled people navigate complex systems.

I am also a firm believer there should be no negativity attached to the word 'disability'; it does not need to be 'diverse abilities' or 'disAbility'. If you are unable to use that word, you need to investigate the ableism in that.

There should be no negativity attached to the word 'disability'; it does not need to be 'diverse abilities'

Spencer: There has been controversy in the disability community about the new movie 'The Witches'. Are there any shows or movies which you think should be used as models of how to properly depict disabled persons and disability issues?

Heather: Speechless is one of the only shows I have seen that done good job. The show features a family in which one of the sons has cerebral palsy and is non-verbal.

The actor in that role actually has cerebral palsy, so how he moves is an accurate representation, and although the actor is verbal, people who use communication boards were consulted to make his communication realistic. The issues are also representative and relevant, and I think this is because one of the main writers was disabled and the creator had a disabled sibling.

Another good representation is the How to Train Your Dragon movie series. The 2 main characters, Hiccup and Toothless, both have disabilities, but they find adaptations and disability does not stop them; in fact, disability ends up being a strength for them.

Spencer: What is your plan going ahead?

Heather: The most important thing for me is to be learning as much as I am teaching.—that’s why I am focusing a lot on intersectional work now. When I am able to get something as well as give something, it refreshes me and provides the right balance to my work.

I am also working on a book about disability and my experiences, which I am hoping to finish by the end of spring, and CAN is working with students at UBC on a digital zine called Crip Notes—a publication which represents the diverse experiences and backgrounds of disabled students in academia.

In all the work I am doing, I want to be able to connect to new audiences, to people who aren’t already on board and may not be aware of these issues. It is by reaching these people that the most change can be made, and it is through collaboration that the best results are achieved.


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