Today I wanted to start unpacking the concepts of ableism and accessibility.

For people who have never either experienced disability or having a chronic illness, or have never supported someone who does, accessibility is most likely something you’ve never had to think about. Part of living in an ableist society is that it’s taken for granted that you can go inside a building with stairs, walk down the street, go to the bathroom, read a sign or listen to the radio and understand what it says. These are just some obvious examples, but there are subtler layers that can be barriers for those of us living with disabilities and chronic illness.

Lack of access to nurturing touch for people with disabilities and chronic illness exists for many different reasons – social, physical, environmental, emotional – depending on the individual. As Cuddlists, it is important for us to consider how we can make our work accessible to the people that want and need our services.

Three things we can consider to make our work more accessible:

• Is our space set up in a way to accommodate people with mobility issues? If not, can we arrange to see clients who can’t access our space in their home or at an accessible location?
• Is our space scent free? (many people with chronic illnesses such as fibromyalgia, Chronic Fatigue, Lyme, and autoimmune diseases have multiple chemical sensitivities) If not, are we willing to change the detergents, body care products, cleaning supplies, etc. that we use to make our space as scent free as possible?
• Is our space flexible to meet different sensory needs – for example lights that can be dimmed or ability to reduce sound? If not, can we get creative in how to meet those needs as best we can?

Beyond considerations for making the physical environment as accommodating as possible, and more importantly in my opinion, is the work of addressing our own internalized ableism. This doesn’t mean that we all have to go out and become disability justice experts. It does mean noticing where we feel discomfort in our own relationship with the concepts of disability and chronic illness, digging into why that is, and overcoming those fears or other emotional reactions we may have.

Overcoming our internalized ableism allows us to move beyond seeing just the illness or disability and see and be with the person that they are. Even as someone with a chronic illness/disability, I have my own struggles with judgment of my limitations and how my bodymind don’t fit into the able-bodied cultural narrative. That judgment can consciously or unconsciously extend to other disabled/chronically ill people. It’s a continuing practice of coming back to compassion, empathy, and recognizing the humanity of all people no mater how differently abled they may be.

I recently came across the work of Mia Mingus, a writer, educator and community organizer for disability justice and transformative justice. I encourage you to check out these two articles on her blog:

Forced Intimacy: An Ableist Norm

“Forced Intimacy” is a term I have been using for years to refer to the common, daily experience of disabled people being expected to share personal parts of ourselves to survive in an ableist world. This often takes the form of being expected to share (very) personal information with able bodied people to get basic access, but it also includes forced physical intimacy, especially for those of us who need physical help that often requires touching of our bodies.”

Access Intimacy: The Missing Link

“Access intimacy is that elusive, hard to describe feeling when someone else “gets” your access needs.”
These two articles offer a glimpse of the struggle of living in an ableist world and how it can feel to be truly seen, heard, and supported by others who get it. As a Cuddlist, I strive to offer access intimacy to my clients as well as appreciate my able-bodied clients that “get” my own access needs to be able to take care of myself to offer this work.

3) I wanted to share a really helpful web document I came across recently that I think is a beneficial read on practical ways to work with people with disabilities in non-ableist ways.

United Spinal’s Disability Etiquette Guide

The guide is available as a free download or you can order print copies through their website. They cover specifics for a number of visible and invisible disabilities as well as ADA (Americans with Disabilities Act) compliance information.

The key take-away: “While the disability is an integral part of who they are, it alone does not define them. Don’t make them into disability heroes or victims. Treat them as individuals.”

Its well worth the read!

2) Hello Cuddlist Community,

Today I want to talk a bit about invisible disabilities.

You may be wondering, what is an invisible disability? The Invisible Disabilities Association defines it as “a physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker.” It “refers to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations, and vary from person to person.”

“About 10% of Americans have a medical condition which could be considered an invisible disability. 96% of people with chronic medical conditions live with a condition that is invisible.” Meaning that you can’t tell just by looking that they are disabled or chronically ill.

Having an invisible disability often means that people have a hard time understanding that you are sick when you “look healthy.” Myself, and others with invisible chronic illnesses and disabilities have all experienced people who do not believe that we are sick, including medical providers. We face an ableist culture where looking normal/healthy must mean that you are. And when you aren’t and need support and accommodations, it can be really challenging to be faced with disbelief, rejection, or worse. There is a constant burden to either prove our illness or to try and “pass” as healthy.

It’s important to be conscious of the emotional and physical pressure that is so often put on those of us with invisible disabilities and illnesses to act like healthy, able-bodied people. As Cuddlists, we have an opportunity to support clients with invisible disabilities by believing what they share with us about their health. We can provide a safe space by offering accommodations and more importantly, a space for them to be witnessed without judgment or a need to perform being healthy.

This compassion, trust, and care offered along with consensual touch are what drew me, a person with an invisible chronic illness and disability, to Cuddlist as a receiver and provider. I believe this work can be of great benefit to those of us with invisible disabilities and hope that my sharing will help other Cuddlist feel more comfortable working with people with all kinds of disabilities and chronic illnesses.