Disability Pride Month 2021

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By Sarah Fowler

As July comes to a close, Worldwide Speech would like to formally address Disability Pride Month. I chose my words carefully when I wrote “formally address” rather than “celebrate” because somehow the true meaning of Disability Pride Month gets lost in celebration translation. While the month is called Disability Pride Month, many disabled individuals do not feel proud of their disabilities. They don’t want to “inspire” others. They just want to make it to the end of the day.

The disabled community, myself included, has been increasingly acknowledging just how embedded ableism truly is in our society. The notion that we have a whole month dedicated to being proud of ourselves or for others to be proud of us suggests that, at some point, we and/or others aren’t proud of disabilities. I personally love the shift that occurred with Autism Awareness Month. The community spoke up and said “awareness” isn’t enough. They instead chose the term “Acceptance.” I would love to see a similar shift with Disability Pride Month. What would it be like to have Disability Acceptance Month? How might that look different?

I personally think it could help alleviate or at least lessen the impact of the shame cycle disabled individuals experience in response to disability pride month. They may not feel proud and in turn, feel bad that they don’t feel proud. While I speak for myself in terms of my own disability, it’s important to know the disabled community varies vastly and individuals may think much differently than I.

*Edit: After I posted this blog, Lisa Barnick from the Worldwide Speech Team sent me this video with a note explaining that, “Her perspective on this month is pretty similar, but goes in a different direction, as well.” If you have the time, watch the video below! My favorite note was to be proud of the perseverance it takes to be disabled, so I’ve added it to the list below.

In the essence of Disability Pride, here is a list of 11 things people with disabilities can be proud of, even if they aren’t proud of their disability:
  1. Getting up every morning even when you “can’t even”
  2. Saying no to an event you don’t have enough spoons for *see below
  3. Problem-solving how to attend events that are not accessible
  4. Going to therapy services (e.g. Therapy, PT, OT, SLP, etc.)
  5. Getting through each and every doctor’s appointment
  6. Pushing through a flare-up (only when necessary)
  7. Doing what you love despite your disability
  8. Self-disclosure of your disability
  9. Raising awareness for your disability
  10. Participating in research studies
  11. Perseverance in the face of adversity

*A quick note on the spoon theory…

The spoon theory refers to the metaphor chronically ill patients use to describe how much activity they can do. To oversimplify, if I only have 3 spoons today, that means I can do 3 activities such as, go out to eat, see a friend, and do household chores. Some activities take more than one spoon, for example many “spoonies” as we call ourselves use 2-3 spoons for a shower. Getting undressed, washing body, drying off/getting new clothes on.

Activities of daily living (ADL) are much more exhausting to those with disabilities and it’s important to understand the spoon theory in order to accommodate your loved ones. If you know your friend is having a 2 spoon day, you might come over and watch a movie together. Whereas if your friend is having a 5 spoon day, you could go do an activity that takes more energy, like visiting a park or garden.

Ableism

Ableism was mentioned in the introduction of this blog. This term has picked up momentum and has a lot of traction within the disabled community. But what is ableism and how can we help?

In short, ableism is the discrimination against people with disabilities under the belief system that typical abilities are superior, as well as the assumption that disabled people require ‘fixing.’ Just like racism and sexism, ableism is systemic. It is deeply rooted in our thoughts, actions, and policies. Ableism can be further complicated by intersectionality which may lead to additional discrimination based on race, gender identity, and age, often resulting in inadequate healthcare. Ableism comes in many shapes and sizes which are discussed below. [1]

Big Picture Ableism

“Big picture ablesim” includes well-know large-scale practices that affect people with disabilities. Below are some examples from Ableism 101: What it is, what it looks like, and what we can do to fix it by Ashley Eisenmenger. [1]

  • “Lack of compliance with disability rights laws like ADA
  • Segregating students with disabilities into separate schools
  • The use of restraint or seclusion as a means of controlling students with disabilities
  • Segregating adults and children with disabilities in institutions
  • Failing to incorporate accessibility into building design plans
  • Buildings without braille on signs, elevator buttons, etc.
  • Building inaccessible websites
  • The assumption that people with disabilities want or need to be ‘fixed’
  • Using disability as a punchline, or mocking people with disabilities
  • Refusing to provide reasonable accommodations
  • The eugenics movement of the early 1900s
  • The mass murder of disabled people in Nazi Germany” [1]

Everyday Ableism

People say, “Don’t sweat the small stuff,” but we all know, small stuff builds up. Check out the examples of minor ableism below. As a person with a physical disability who uses a mobility aid, I’m going to star each example based on how often it occurs in my life as a disabled person (see key below). In addition, for growth to be made on the abled side of things, I think it’s important to explain how these questions/comments make disabled people feel in order to present an opportunity to develop empathy for the disabled community. Again, I can only speak to my own experience but I know many of my friends in the disabled community feel similarly.

*Every once in a while
**Often
***All the tim
e

1. Choosing an inaccessible venue for a meeting or event, therefore excluding some participants [1]***

This makes me feel frustrated and gives me major FOMO (fear of missing out). Especially given we’re in a social media era in which friends post themselves on outings that I’m unable to go to. It leads to shame about my abilities or lack thereof which then turns to grief.

2. Using someone else’s mobility device as a hand or footrest [1]**

This is something that if we are friends, it’s cool. But if I don’t know you, this makes me feel uncomfortable. We become attached to our mobility aids as if they are a part of our body, thus you are essentially touching a body part without consent. For this reason, it’s also uncomfortable when some asks to test it out.

3. Framing disability as either tragic or inspirational in news stories, movies, and other popular forms of media [1]***

If I had a dollar every time someone told me I’m inspirational for having brain/spinal surgery, I’d be rich enough to get adequate medical treatment! It is frustrating for the same reason pride month is. We don’t always feel inspirational. We sometimes feel like we’re dragging our feet just to get by and how on earth is that inspirational? Again the shame cycle spins in full force as we feel bad that we don’t feel inspirational yet feel immense societal pressure to do so.

4. Casting a non-disabled actor to play a disabled character in a play, movie, TV show, or commercial [1]***

This is one annoys me. There are so many talented actors/actresses with disabilities. It’s 2021 and we have absolutely no excuse for continuing to tell disabled stories through able-bodied mouths.

5. Using the accessible bathroom stall when you are able to use the non-accessible stall without pain or risk of injury [1]*

I have dodged this bullet but would be frustrated nonetheless. Again, it’s so easy to increase accessibility, but not so much in an ableist society with disabled blinders.

6. Talking to a person with a disability like they are a child, talking about them instead of directly to them, or speaking for them [1]*

I feel uncomfortable and degraded when people speak with high-pitched intonation, pity pouts, and excessive smiles. I also don’t appreciate when people talk to my caregivers instead of me. My comprehension isn’t disabled, just me!

7. Asking invasive questions about the medical history or personal life of someone with a disability [1]***

If coming from a complete stranger or even an acquaintance, I feel uncomfortable sharing my life’s story with someone I know next to nothing about. I feel awkward, vulnerable, and feel like my privacy has been invaded. This can be okay for close friends, but it’s always a good idea to ask someone if they feel comfortable sharing.

8. Assuming people have to have a visible disability to actually be disabled [1]***

The number of times I’ve heard, “Oh you don’t look disabled!” or “There’s no way, you look normal.” It hurts for a couple reasons. 1. Who are we to decide what disabled looks like? It is agitating when people assume disability is a one size fits all when we all know one size most definitely does not fit all, both literally and metaphorically. 2. The disbelief cuts like a knife. Why would I fake something this awful??

9. Questioning if someone is ‘actually’ disabled, or ‘how much’ they are disabled [1]***

This is far more common than you’d think and is an example of gaslighting at its finest. According to the government, I’m not considered disabled because I have a job. Yet I use a mobility scooter because I can’t walk, had a brain/spinal surgery, two major car accidents, one resulting in a traumatic brain injury and one resulting in craniocervical instability, have over 10 diagnoses… But that’s not enough to be officially considered disabled? These ableist ideals run rampant in politics, businesses, and society. It makes me feel uncomfortable, anxious about whether anyone will believe me, depressed from having to explain how disabled I truly am, vulnerable, and violated.

10. Asking, “How did you become disabled?” [1]***

This question is always awkward. I can’t just say “genetics” because it’s so much more than that. This means I have to brief you on all 3 of my major chronic illnesses in order to fully explain how I lost the ability to walk or why I continue to wear a neck brace regularly. I’m asked this question more than any of the others on this list. It makes me feel socially awkward, anxious about how the other party will react to knowing how disabled I truly am, depressed from explaining all the things I cannot do, vulnerable, and violated.

Have you asked a person with a disability any of the questions from this list? If so, it’s okay! Awareness is the first step on the path towards understanding and acceptance.

“They say that animals are incapable of feelings and reasoning. This is false. No living thing on earth is void of either. They also say that man is the most intelligent — and the most superior — species on earth. This is also false. It is very arrogant to assume that we are the most intelligent species when we keep repeating the same mistakes over and over again. It has been shown that both rats and monkeys learn from making errors, yet we have not. Our history proves this. All creatures on earth have the capacity to love and grieve the same way we do. No life on the planet is more deserving than another. Those who think so, are the true savages.”

Suzy Kassem, Rise Up and Salute the Sun: The Writings of Suzy Kassem

Ableist Microagressions

Ableist microaggressions are casual verbal or behavioral expressions that have a negative slight in relation to someone’s disability. Here are some examples myself and the disabled community hear regularly [1]:

  • Why do you take so many meds?
  • You should try ______ (yoga, meditating, acupuncture, etc.)
  • Can I pray for you?
  • You look tired
  • I don’t even think of you as disabled.
  • Shouldn’t you be on the short bus?
  • You’re pretty/handsome for a disabled girl/boy
  • I knew someone who had [insert disability] but it was nowhere near as bad as yours
  • My friend had [insert disability] and didn’t live long after their diagnosis
  • I want one of those! Where’d you get it? How much was it? *while pointing at my mobility aid*
  • Wait you can walk? Why do you need a scooter then…

It is important to be aware of how microaggressions, everyday ableism, and big picture ableism create a not-so-ideal life for disabled individuals which leaves us feeling marginalized yet swept under the rug. We are in pain, depressed, anxious, underrepresented, disrespected, and not trusted. That is the true nature of being disabled. We wouldn’t need an entire month to emphasize disability pride in a non-ableist society that is built with disabled people in mind. It’s time we stop asking people to be proud of their differences and instead take action to accept them the way they are, pain, fear, anxiety, and all.

How Worldwide Speech is fighting ableism and promoting disability acceptance

Worldwide Speech is a company that was born from a dream of accessibility for children with disabilities whose families are in the foreign service and/or living abroad. These children would otherwise have little to no access to adequate speech/language therapy, occupational therapy, special education, tutoring, and reading intervention. Especially if English is their first language. Our company prides itself on empowering families abroad, promoting disability acceptance, advocacy, and education.

Accommodations

During the pandemic, people with disabilities watched as the world provided all of the accommodations they’d been told were impossible and are dreading the moment when these accommodations slip away. 2020 was miserable, but it did show us how easily we can make work, social, and home life for people with disabilities.

Conclusion

So this year, let’s celebrate disability acceptance. Let’s fight to keep the practices we gained from the pandemic like distance learning, telemedicine, and remote work. Let’s take the time to educate, spread awareness, and promote acceptance by speaking up against ableism even when it’s subtle and taking our well-deserved place in this world because that is something to be proud of.

Additional Resources

  1. Never heard of Disability Pride Month? Let’s talk about why
  2. A chance to ‘amplify one another’: What is Disability Pride Month?
  3. Wheelchair Etiquette and Disability Awareness
  4. Disability Pride Toolkit and Resource Guide
  5. Celebrate Disability Pride Month with Great Kidlit Books

References:

  1. Ableism 101: What it is, what it looks like, and what we can do to fix it