Yes, that’s me … in a wheelchair. I’m still getting used to the idea. I came to a point of no longer being able to leave the house. Being on my feet more than 10 minutes at a time and walking any distance at all became impossible. I can manage a trip to the grocery store once a week if I can be dropped off at the door and I am able to rest the remainder of the day. Outings with friends are only possible if I can park my car close and sit with my feet propped the whole time. Then I need a day to recover.
When lockdown and travel restrictions eased, conversations about traveling to see family began. I knew I would not be able to navigate an airport – think of long lines at security and mad dashes to the airplane gate. To manage my symptoms I have to walk very slowly and sit or lay down often.
I knew I couldn’t stroll through an aquarium or take a walk on the beach. So many things I wanted to do with my family were off limits to my hopelessly energy deficient system. It was heartbreaking to consider staying home. I couldn’t imagine making everyone wait as I stop to rest every ten steps, or, even worse, cutting outings short because I could not go on further. I was afraid of overdoing it and making myself permanently worse. My doctor and I agreed a wheelchair would be a game changer.
It took me six months to warm up to the idea, but I knew it was the right decision.
The wheelchair arrived last month. Despite the shocking reality check of the unmistakeable symbol of my illness, I kept faith that it would give me much needed freedom. I’m so glad I stayed with it. My chariot carried me through the airport, made catching a plane in a short layover possible, allowed me to enjoy views of Puget Sound from the deck of a ferry, facilitated long strolls through the Seattle Aquarium and along the waterfront, and, most importantly, made it possible for me to explore new things with my two year old son.
I am beyond grateful for the assistance of this mobility aid. I came home feeling better than when I left! It made all the difference. Almost everywhere I went was accessible. I was concerned about discrimination, but didn’t experience it thankfully. I know it has not always been this way. I’m indebted to the countless disability advocates that have paved the way.
Most people wouldn’t guess that I have been a part of the disabled community for a while. My limited work hours and extensive rest are unseen because I work from home and for myself. I pace myself so that best cognitive function to coincide with my work hours. I stagger personal hygiene and housework activities to limit exhaustion before my workdays.
The Americans with Disabilities Act “defines a person with a disability as a person who has a physical or mental impairment that substantially limits one or more major life activity. ” My physical illness substantially limits at least five major life activities.
The group Diversability says that, “An individual with a visible or invisible disability is defined as someone who has, or considers themselves to have, a long-term, or recurring, issue that impacts one or more major activities that others may consider to be a daily function.”
My illness impairs the way I eat, the way I take care of personal hygiene such as bathing and dressing, my ability to work, how I engage in social activities, my ability to exercise, and my ability to do housework among countless other things. The wheelchair makes all this difficulty more visible while paradoxically making my life easier.
I am not “wheelchair-bound”, I am a “person who uses a wheelchair” and their are countless others like me. For many different reasons, people who can walk short distances use a wheelchair to increase their accessibility to activities non-disabled people also enjoy.
Disability Pride Month
The month of July is recognized by the disability community as Disability Pride Month. It celebrates the anniversary of the passing of the American Disabilities Act in July of 1990. Not yet acknowledged nationally, it is gaining attention.
This is a time to celebrate all people with disabilities, physical and mental, visible and invisible. People with disabilities are a widely diverse population who contribute generously to their communities.
One thing I was acutely reminded of while wheeling through crowds was that I couldn’t spot others like me. Not all impairments are visible and not all impaired people are able to go out. There is a lot of pressure to look healthy and normal. Being a person with a disability can be lonely. Disability Pride Month is an opportunity for people with disabilities to come together and know they are not alone. It is a chance to speak up and celebrate our differences and our struggles, and to champion change towards more acceptance.
In honor of Disability Pride Month, I am offering a free Spiritual Direction session to one person with a disability. To apply for the free session, email me by July 31, 2021 at firstname.lastname@example.org with the following:
- Short story of living as a person with a disability (1-3 paragraphs)
- What you hope to receive out of spiritual direction
- How your strength of spirit gets you through tough times
At the end of the month I’ll email the person I’ve selected for the session to arrange scheduling. Current, previous, and new clients are all welcome to apply.
In addition, this month I will donate $200 total to 501(C)3 non-profits that serve people with disabilities. If you have an organization that you’d like to nominate for the donation, please email it to me.
Some of you may be wondering about why I identify as disabled and the details of that. I am glad to help raise awareness about that too. My diagnosis is ME/CFS. It is a neuro-immune disease that affects millions of people around the world. I wrote about it last year and you can read that article here.
ADA Disability Definition: https://adata.org/faq/what-definition-disability-under-ada
Diversability Definiton of Disability: https://mydiversability.com/about
More on Disability Pride Month: https://www.ameridisability.com/post/how-to-display-disability-pride
About Author, Stacey L. L. Couch
Stacey L. L. Couch is a Spiritual Director who teaches about archetypes and symbolism. Her speciality is working with soul pioneers - those of you who are making it up as you go along the spiritual path. She works with beginner and life-long spiritual seekers. Through working with Stacey, lost seekers find their way home and professional spiritual guides receive mentorship. Stacey empowers people with the ability to explore their purpose and calling. Wisdom found in story, mysticism, and nature provide guidance and healing in her work. She is the author of Gracious Wild: A Shamanic Journey with Hawks. She values mindfulness, wonder, and compassion in her daily spiritual practice. Learn More about Stacey.