Confronting our Ableism

This is the third post in a series. Click here to start at the beginning.

Learning Together, Connecting Communities (Learning Together) taught us many lessons, not least of which was how to recognize and confront our ableism. Ableism describes the practices and attitudes in society that devalue and limit the potential of people with disabilities. Unexamined, our ableism can keep people with disabilities “in” by forcing them to conform to societal norms; “out” by blocking participation; and “down” by creating a culture that causes people to count themselves out. These practices, intentional or not, assign inferior value to people with all kinds of disabilities. As Northwest Health Foundation becomes more aware of all the ways we are keeping people with disabilities in, out and down, we are committed to addressing this ableism in all areas, from physical environment to business practices and culture.

A screenshot from the short film Sounds for Mazin, in which a young boy gets a cochlear implant so he can hear. This film addresses the controversy around cochlear implants and the preservation of Deaf culture.

[Image description: Close up of a young boy’s face in profile. His eyes are shut; he is smiling; and he has a cochlear implant in his head.]

Accommodations for the Able-bodied — Keeping People In

Mainstream society provides accommodations for the able-bodied all the time. When you attend a conference or meeting, the host provides chairs so that participants can sit and be comfortable. Meanwhile, an individual who uses a wheelchair brings their own chair. Architects design buildings with electricity and lighting so that the sighted people who will use the buildings can see what they are doing. An individual who is blind does not require this type of accommodation. Many accommodations — accommodations for able-bodied people — are provided without a second thought. Yet accommodations for people with disabilities are usually left out unless specifically required by law or a funding source. They are often treated as an unusual request and an extra expense, and due to this attitude many people with disabilities choose not to ask for them, doing their best to make do without or not showing up at all. Accommodations for the able-bodied are an expectation and a norm that keep people with disabilities in.

In order to create space for our partners and avoid keeping them in, we reexamined how we set up participation. Instead of assuming what people needed to participate in our Learning Together gatherings, we asked them what they needed. And we didn’t just ask once; we asked at every stage of our planning and convening: when they registered, on phone calls and in emails leading up to the gathering, and at the gathering itself. The responses varied widely, and sometimes contradicted one another. For instance, while some people were hard of hearing or easily distracted and needed us to speak loudly, others experienced pain with loud noises. In this case, we did our best to accommodate everyone by limiting outside noises, writing the main points of our conversations down on large pieces of paper, and celebrating with silent applause. This simple question — “What helps you participate?” — surfaced the ways we fail to recognize differences in our daily practices. We learned that actively considering the broad range of ways people engage allowed us to imagine new facilitation methods that are beneficial to all participants, not just those with disabilities. We’ve tried to bring this question into all of our meeting spaces since.

A screenshot from the short film The Commute, in which a man who uses a wheelchair faces many obstacles to taking public transportation.

[Image description: A man in a wheelchair with a package on his lap looks down from the top of a tall staircase.]

Isolation — Keeping People Out

Another lesson we learned from our Learning Together partners: ableist practices are isolating. They keep people out. For example, one of our partner organizations — Immigrant and Refugee Community Organization (IRCO)— brought some community members to our gatherings who were Bhutanese refugees raised in refugee camps in Nepal, as well as Deaf or Hard of Hearing. Living in the United States, they face multiple language barriers. They are excluded by Bhutanese family and community members who are unwilling to make the extra effort to communicate with and include them, and they are excluded by Americans who do not speak American Sign Language, much less the Nepalese equivalent. These community members expressed their wish to find jobs and support themselves, rather than having to rely on their parents for food and shelter. Making sure they were able to participate in the Learning Together gatherings was a challenge, and we made many mistakes in our attempts to include them; but in the end their participation was invaluable. We learned so much from them.

One thing we learned through their participation was how to work with interpreters. At the first Learning Together gathering we hired ASL interpreters, but only for part of our time together. The rest of the time IRCO’s ASL instructor and another IRCO staff member interpreted for their community members. During this first gathering we learned that American Sign Language and Nepalese Sign Language are entirely different languages. We also learned about Certified Deaf Interpreters. Certified Deaf Interpreters are deaf and offer a depth of linguistic and cultural understanding that is often not provided by hearing ASL interpreters working alone. At the second gathering we hired hearing ASL interpreters to interpret English to ASL, and we hired Certified Deaf Interpreters to interpret the hearing interpreters’ ASL into more fluent ASL. As at the first gathering, IRCO’s ASL instructor and an IRCO staff member provided additional help with Nepalese and Nepalese Sign Language interpretation. This wasn’t a perfect setup. Later on we found out that we should also have hired a Nepalese Sign Language interpreter, instead of allowing the IRCO staff members to speak on the community members’ behalf. Hopefully, with this knowledge, we’ll do better next time. Since the Learning Together gatherings, we’ve been excited to develop our professional networks, not just with sign language interpreters, but with Spanish language interpreters and translation services as well.

A screenshot from the short film Guest Room, in which a young woman with Down Syndrome finds out she is pregnant, and she and her boyfriend, who also has Down Syndrome, must decide whether to keep the baby.

[Image description: A young woman with Down Syndrome peeks over the top of a blanket. Only her eyes and nose are visible.]

The Cost of Exclusion — Keeping People Down

As mentioned above, people with disabilities often don’t ask for the accommodations they need (interpretation, closed captioning, meeting spaces with ramps and lifts, etc.), because they know these accommodations cost a lot of money. Some of our partners shared that they often opt out of participating because they’ve internalized the message that their participation is not worth the expense. This led us to consider our organizational budget, and how our budgeting practices are keeping people with disabilities down.

By not budgeting for accommodations and not asking people what they need to participate, organizations send people with disabilities a message that their needs are too great and their participation is unwelcome. We do not want to be sending this message. So, on top of always asking people what they need to participate, we decided to make some changes to our budgeting practices. Northwest Health Foundation has elected to categorize accommodations for participation in a new way. Instead of paying for accommodations using our meeting or program budgets, we will categorize accommodations as an operating expense. In this way, accommodations will be considered as essential as paying our electric and water bills, or stocking our office with pens and paper. This allows us to anticipate and plan for many types of needs, including supports for childcare, travel and translation, as well as sign language interpretation, physical alterations to our meeting spaces and more.

A Long Way To Go

This post in no way accounts for all of the ways our organization keeps people in, out and down. We have further to go. We know there is more keeping people in than our expectations for “normal” participation in meeting spaces. We know isolation goes beyond language barriers. Communities of people with disabilities are kept out by cultural, developmental, cognitive, physical and other assumptions and expectations as well. And we know our budget is not the only way we are keeping people down. In order to confront our ableism, we’ll need more leadership and direction from communities of people with disabilities — something we’ll talk more about in our next post.

Click here to read the next post in this series.

By the way, all the screenshots used to illustrate this post are from films that will be shown May 27–29 at the Portland ReelAbilities Film Festival, which is presented and produced by our Learning Together partner Disability Art and Culture Project. If you’re interested in learning more about how we keep people with disabilities in, out and down, you should check it out.