Disability Allyship #9
Problematic Pity and extreme gratitude.
Hi my lovely friends, welcome to Disability Allyship.
This newsletter is about all things disability AND allyship, to give you a fresh perspective and advice that you can implement immediately to make your world more inclusive of disabled people. As a disabled woman myself, I am on my own allyship journey and I am excited to have you along on the journey.
A huge shout out to Rosie for buying me a cuppa in support of my work. If you can and feel inclined, you can support me here - Buy Me a Coffee.
#Thought - Thank you!
[Image: Various shades of thick brown lines run across the image. A white circle sits on top of them and in the circle is a quote from Pope Francis, “we perceive a situation most accurately when we look at it from the standpoint of those on the edge rather than those in the centre.”]
I want to practice a little gratitude today. Last week, for International Day of Persons with Disabilities, I spoke to three organisations who are all doing the work, or looking to start doing the work, around disability inclusion and access. Each session was unique to each organisations, and each created a growing awareness and understanding of disability lived experience.
I always point out though, that I am not a monolith of disability.
Disability is such a nuanced, broad and deep experience. Not one person’s experience is the same. Even for people with the same condition and/or impairment. This is why you can’t expect that all of your allyship actions, accessibility and inclusion practices, will impact all disabled people equally. For example, by installing a ramp into your space will certainly provide access and a sense of inclusion for a wheelchair user, but how is a ramp going to have the same affect on someone who is Autistic or who has generalised anxiety disorder or someone with vertigo?
I urge caution in my sessions— listen to me, absorb, take what you can, but use my workshops as a starting point. Don’t stop growing your allyship practice after one disability awareness/accessibility workshop. Actively seek out other disabled people, speakers, content creators, writers, and artists. Take in their stories and their perspectives, and absorb their advice into your allyship.
After my sessions with Algonquin College in Canada, one of the participants sent through a quote from Pope Frances that he wanted me to know. It was a reflection of how he felt after the keynote and workshops I did—
“…we perceive a situation most accurately when we look at it from the standpoint of those on the edge rather than those in the centre…”
Disabled people are at the edges of society. Add on layers of intersection, and these edges get rawer, harder, and more exclusionary. If we want to make the world an equitable place for all disabled people, we have to offer a seat at the table for Black and Brown disabled people, Indigenous disabled people, LGBTQAI+ disabled people, disabled people from different religions and spiritual practices, disabled people of different ages, etc. Disability is not a monolith; we are a richness of experience around hardship, exclusion, and shame, as well as creativity, joy, and pride. So as an ally, please ensure that you are standing with all disabled people, because all disabled people need allies like you.
#Action - Practice compassion, always.
*CW: abuse, suicide, ableism
[Image: a pink paper heart on a stick sits in the middle of a black background]
As an ally you will need to show compassion to disabled people, not pity, but compassion. And this compassion as an ally has to stem from the standpoint of understanding the barriers, abuse and issues that disabled people face every single day.
Disabled people disproportionately experience unemployment, homelessness, and sexual and physical abuse. Disabled people live with a deep and long history of eugenics, with eugenic practices still happening, including termination of babies detected as have genetic abnormalities (for eg Down’s Syndrome) right up to full term, and also disabled people being put on non-consensual DNR’s when in intensive care, for eg during the Covid-19 pandemic). Disabled people often miss out on or have very limited access to quality education, due to inaccessibility and negative attitudes about their ability to learn and life chances. This is only the tip of the iceberg of what disabled people experience daily that tells them that they don’t belong in this world. And it hurts.
Remembering the above when you practice allyship, again, not from a standpoint of pity, but from one of compassion, means that your allyship will be authentic and not driven by a need to tick boxes— no performative allyship here, thanks. Compassionate allyship means hearing and seeing the horror and not turning away, but stepping forward, asking what you can do to change the oppressive systems that suppress, hide, and even kill disabled people on a daily basis.
Here are three steps you can take to be a compassionate ally:
Listen generously— when engaging with disabled people, listen to their stories, and most importantly believe what they tell you. One of the most disheartening things is to not be believed about the experiences that you have… at a deeper level this is tantamount to gaslighting.
Ask the right questions— don’t centre yourself in the conversation, make sure that any questions or statements you are asking centre the disabled person and their experiences. In that moment of allyship, remember it isn’t about you.
Check your biases and relax your judgements— we can’t deny that we live in a world where we all have inherent biases about different identities and lived experiences. Don’t let your biases impact your judgement on a situation. For example, there has been a lot of talk lately about the rates of sexual abuse that disabled women experience daily. Often these stories of disability and sexual abuse are scoffed at and not believed, because of the belief that disabled people would never be sexually desired. This is a false bias and can lead to many disabled women not getting the support and care that they need.
#Mood - Why pity is problematic.
[Image: A white woman wearing a blue jumper and white vest stares out a window covered in white curtains. She looks sad.]
“I pity you.”
My face flushed with embarrassment and I glanced around quickly to see if anyone had seen what was happening. I replied, “Oh! Please don’t, I don’t pity myself, my life is actually really good.”
“But I just really want you to know that I pity you immensely; I wouldn’t want to have missing limbs, life would be to hard.”
My face was now really heated, not just from embarrassment, but a swirl of negative emotions, shame, humiliation, embarrassment. The urge to lash out verbally was visceral, but I couldn’t, I was in the middle of a school talking to one of the young teens I had just run a workshop with.
Taking a deep breath, I reasserted my claim that she didn’t have to pity me as I didn’t pity myself… but on reflection I am now not even sure that that was the response I should’ve used now… it feels halfhearted and weak. But what could I say to a person who was belittling my very life through the veneer of kindness.
And that is the problem with pity. It is not the balm to a marginalised person that many people think that it is. Pity is like a slash to the soul, with each repeated “I pity you” or it’s sister comment “I feel sorry for you,” building up until you feel cut to shreds. Pity hurts like nobodies business.
I am currently reading Brené Brown’s new book Atlas of the Heart, and in Chapter 7 - The Places We Go With Others - there sits pity and Brené’s explanation of it literally took me to my knees. I cried reading this:
"There’s nothing worse than feeling pitied… Pity involves four elements: a belief that the suffering person is inferior; a passive, self-focused reaction that does not include providing help, a desire to maintain emotional distance; and avoidance of sharing another person’s suffering.”
Two of these elements kicked me in the guts because for me they are profoundly true - that people believe I am inferior and that they desire to maintain emotional distance. If people express their pity for my limb difference to me, they are saying that my different body makes me less-than them, that I am not worthy of anything, worthy of a chance in life, worthy of opportunities or equality… And by expressing their pity to me they are distancing themselves from me emotionally. In other words, they don’t want to know what my life is really like, and when I do try to tell them about my life and that I am happy, they simply can’t believe it, they can’t connect that I can experience joy and be disabled.
I don’t feel self pity. In fact I celebrate the fact that my body had enabled me to have many wonderful experiences in life, the Paralympics, art school, moving to the other side of the world, and the friendships that have developed. But I want others to see this aspect of my life as well, from my eyes, not layered with internal biases and beliefs about disability that actually cut me to the bone.
[ID: Neon text lights read hashtag tweet tweet. They are mounted on a wall that has plant and bird patterned wallpaper on it.]
@blindwoodturner - Chris Fisher is the UK’s only completely blind professional woodturner and the first blind turner to be accepted onto the Register of Professional Turners. Chris also has a YouTube channel and travels the UK demonstrating his skills and raising awareness about visual impairment.
@HesterGrainger - Hester was diagnosed with ADHD at the age of 43. She is a Neurodivergence campaigner, a mum to two Autistic children, and a freelance writer who openly writes about her experiences with disability.