What I Don’t Miss
A lot of posts about quarantine and lockdowns focus on what people miss the most: seeing friends in person, eating out, family gatherings. But not too many focus on what people don’t miss.
A lot of posts about quarantine and lockdowns focus on what people miss the most: seeing friends in person, eating out, family gatherings. But not too many focus on what people don’t miss.
I just don’t want to spend the time to get to know someone only to find out that they spent the last year selfishly endangering other people for their own personal benefit.
Recently, Buzzfeed released a video titled Dating With Cerebral Palsy where the sister of a man with Cerebral Palsy helps him set up an online dating profile and ultimately, go on a virtual date.
A couple of years ago, I experienced severe headaches and nausea while on a cruise. Stuck in the middle of the ocean, I had an anxiety attack, believing that my shunt was failing and I was going to slowly lose control of my speech and cognition until I slipped into a coma (which can happen with untreated hydrocephalus).
Why is the age of disability onset for ABLE account holders capped at 26 and is anything being done to change that?
Despite their intrusive questioning, there is one area that ableds seem to be absolutely certain about: the existence of ultra‐convenient readily‐available accessibility modifications and mobility aids.
The Disabled Community™ isn’t a community at all. It’s a purity test that every one fails.
Accessibility in Tokyo is, at best, a patchwork of good intentions and half-fulfilled promises. At worst, it appears to be deliberately designed to exclude non-ambulatory folks.
Claiming that a space is accessible without addressing the systems connected to it is like putting a toilet in the middle of a field and claiming you have working plumbing: you can pretend everything is fine for a while, but eventually people are gonna realize you’re full of shit.
You’re actually taking on a lot more risks to your health in exchange for better mobility.
The point wasn’t to be offensive. The point wasn’t to reclaim a word or phrase. If anything, the point was to hear those words spoken in mischief and familiarity, without the pain and hurt that so often came with them.
Getting in your chair should not feel like entering a foreign land. It should feel like putting on a different but well‐worn pair of shoes.
It’s tough to tell how accessible something is if you’re not the one needing it to be accessible. How can cities quickly and effectively judge the state of existing infrastructure?
One day, while standing behind my car and struggling to wrestle both my forearm crutches and wheelchair out of the back seat, an older gentlemen (probably a neighbor of mine) approached me and asked “Do you mind if I ask you a question?”
When faced with barriers to our health or independence, it’s important to evaluate each situation clearly and not dismiss a possible solution simply because it’s unconventional.
The next time you’re explaining how important accessibility is to your able‐bodied friends, don’t just focus on how accessibility makes the most common spaces better for everyone; focus on how a lack of accessibility excludes disabled people from even the most common spaces.
Imagine accessibility issues as a series of awkward, and repetitive conversations you have to take part in. Whether it’s opening a door or moving through a restaurant, you have to talk to someone before you can continue. How many times will you stop and talk to someone before you stop entering these spaces? How many conversations are you willing to have before it’s no longer worth the struggle to go about your day?
I’ll admit that this one is a little shower-thought-y, but I still felt like sharing it.
Dwayne Johnson cannot role up his pants‐leg and comfort a child that just lost a leg to cancer. He can’t take a photo with them to show off their new matching prosthetics. He can’t bring that character to life in the way that matters the most.
Trying to enjoy content about disabled people on the internet is often a frustrating task. We often have to spend a large amount of energy filtering out all the noise and inspiration porn just to catch a glimpse of someone living a life similar to our own.
Recently, I went to the grocery store to pick up a few last minute items only to discover that most of the stuff I was looking for was on the top shelf of whatever aisle it happened to be in. “No problem” you might be thinking, “just ask one of the super helpful employees every grocery store commercial says is right around the corner”. And I would ask an employee for help, but there’s no one. Ever.
Yes, I do sometimes move my arms like I’m running really fast as I head down hill.
You Have the Keys to My Heart (and the Elevator)
All the places, all the spaces made accessible but forever marked as unused and available because we’re never there to need them. We can’t afford to be. We don’t have the resources to fly to, park at, or live in the places specifically built for us because they removed the barriers but failed to fix the system that allowed those barriers to be built in the first place.
Things gym‐owners can do to make their gyms more accessible.
In which I wonder if there was something I could have done to change the votes of my more conservative friends and family.
This is your reminder that it’s totally okay to make “getting out of the wheelchair” and back on your feet, crutches, etc., a goal to strive for.
The sore arms? The blisters? The burned thumbs? Those are the signs of a beginning. It’s the symbols of something new being created; sign posts that lead to something greater.
Here’s the thing no one tells you about using a wheelchair: wheelchairs are incredibly intimate medical devices.
When the hand on your back is from someone who knows exactly how to keep you from falling. When the words “I’ve got you” come from a place not of pity, but of absolute compassion and competence.
When people say stuff like this to someone who has a disability, they’re not so much giving a compliment as much as they are tipping their hand at how little they think of disabled people in general.
Going out for a drink as a wheelchair user can get complicated sometimes, especially if the place you’re going to expects you to sit at the bar if you’re only going to be having drinks.
Hey! Glad I got your attention! Let’s talk real quick about our butts and how we can keep them healthy.
Where I explain, again, why my chair has no push bars.
Thank you so much for stopping by to talk about the New Hire paperwork. Here’s a packet that explains our healthcare plan. We have three tiers for you to chose from: GoFundMe, KickStarter, or Pursuit.
Instead of saying things like “Our accessible rooms can accommodate most standard electric and manual wheelchairs”, give measurements for things in both inches and centimeters. Measure the width of any doors (including closets) as well as the height of fixtures like sinks or counter tops.
Accessible hotel rooms are great: wider doors, lower shelves, and a bathroom with a… standard tub instead of a roll in shower?
Last year, Mattel announced that it was giving Barbie a makeover — introducing new body shapes, skin tones and even flat feet to make the iconic doll look more realistic. “Barbie reflects the world girls see around them,” Mattel president and COO Richard Dickson said.
Despite the ADA becoming law in 1990, the fight for equality was only just beginning. Classrooms, bathrooms, and boardrooms weren’t going to be made wheelchair accessible overnight and it would take a lot of courtroom battles to bring people in line with the new legislation. Some schools would even go out of their way to avoid complying with the law. I went to one of those schools.
I have cerebral palsy. It’s a broad term for a wide array of physical and mental disabilities caused by damage to the cerebral cortex (the part of the brain responsible for stuff like speech and motor control). It’s a birth defect and it will become rarer as science is able to prevent it by avoiding the underlying causes or through early detection and selective abortion.
“Good Job. Now, do it again.” My dad said as he stood in the shade of the garage. It was Summer in Nebraska and I was standing (literally) behind his SUV, having just finished wrestling my wheelchair into the back. I was hot, sweaty, and pissed and my Dad was asking me to take the chair out of the car and do it all over again.
The little boy in the wheelchair at the Starbucks needs to see you carry your own drink. Take your coffee and go up to him. Ask him his name and tell him you like the colors on his leg braces.
rolling down the hallway at top speed, trying to keep track of ten teenage boys at an event for a wheelchair sports camp. I pass a father and his young disabled son, also in a wheelchair.