Coming to Terms with My Disability

Adriane Tillman
Adriane Tillman

My husband often pushes me home in my son’s stroller because I have enough energy to get to the playground but not enough to get home. There are so many types of disabilities and so many ways to address them, and the disability rights’ activists of the 70s taught the world – and myself – that “disability” is normal but that restricting our lives is not. When my husband is grunting and sweating, pushing me up the hill in the stroller with my son on my lap, passersby always smile and laugh and say, “That’s the way to do it!” We smile and nod, too, because my husband and I enjoy walking to the park even if this is the only way for us to do it.

My disability is largely invisible and somewhat fluid due a disease called myalgic encephalomyelitis (ME) – also known as chronic fatigue syndrome. I’m still experimenting with using a wheelchair so that my son and I can travel farther without the aide of my husband. I rented an electric one for a month. It was thrilling being able to leave the house without having to get into the car and not having to worry if I’d crash myself trying to get us home. We’d pull up in the wheelchair, and then I’d promptly stand up out of it to help my son down the slide or climb on the monkey bars and, when it was time to go home, we’d get back in the wheelchair and zoom home, and I’d still have enough energy to cook dinner. I was shy at first about the quizzical stares, but I knew I didn’t have to justify my body to anyone. I was doing what everyone else does all day long: making it work.

Unfortunately, the wheelchair didn’t work out because Oakland sidewalks are notoriously bumpy, and it was too difficult to sit my toddler son on my lap for that length of time. Each time, I’d return home with a headache and dead legs. (My next plan is to try out a wheelchair with better shock absorption when my son is old enough to walk to the park alongside me.) But, for someone with ME, a wheelchair is only one piece of the 1,000-piece puzzle. There are many times my body isn’t strong enough to head to the playground at all. With ME, I’m constantly rationing out my energy and often there isn’t enough for the playground, which a wheelchair can’t fix.

The disability rights’ activists who fought for the ADA act not only gave me the opportunity to accommodate my physical disability, it freed me to acknowledge and respect my body’s needs in the first place. I feel no shame getting pushed in my son’s stroller (although I do feel gratitude for my strong and willing husband). I was shy at first about using the wheelchair since people largely know me to be ambulatory, and I knew it would generate stares and questions and confusion. But, I feel no need to explain or justify my disabilities that are sometimes invisible and sometimes in plain sight – and I owe that to the disability rights’ activists who came before me.

Facebook
Twitter
WhatsApp
Email

Latest News

DHSC released a new progress Report

DHSC has released an update on the progress of the work underway to support the development of a Delivery Plan on Myalgic Encephalomyelitis / Chronic Fatigue. This is dated from December 2022.You can read the full report using the link below: DHSC Information Bulletin Dec 22 FINAL MECFS updated

Read More »
Gold fireworks lighting up over a black background. The words, TOP HITS 2022 is in the center in white lettering. the words: #MEAction accomplished a lot last year is undernether with the #MEAction logo

Let’s Look at #MEAction’s Top Hits from 2022

As we ring in the new year, it is a wonderful time to reflect on how much #MEAction accomplished in a very busy and exciting 2022! There are so many wins to share, so we decided to narrow down the list to our TOP HITS! ——————- #MILLIONSMISSING 2022: * Bringing together the powerful Virtual #MillionsMissing

Read More »
A photo from Millions Missing Scotland of a group of 20 protestors outside the Scottish Parliament. They’re looking serious and holding signs that say Millions Missing, and a pledge signed by MSPs. Many are wearing red ME Action t-shirts. A yellow icon of a person is overlaid next to them with an arrow pointing to it and the words ‘Could it be your MSP?’ A red banner along the bottom says ‘Share your story and ask your MSPs to stand up for people with ME.’

Ask your MSPs to stand up for people with ME

Sue Webber MSP’s motion about ME will be debated in the Scottish Parliament on Thursday 2nd February – and your MSPs should be there! The motion calls on the Scottish Parliament to recognise the outcomes and recommendations of the stakeholder report on ME, including education of healthcare professionals and development of specialist services. We’re pleased

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top