When someone I do not trust pushes my wheelchair without asking, it creates a physical sense of intimacy that is not mutual. It’s not easy to communicate this, so I usually use this analogy: “If you wouldn’t pick up an [able-bodied] woman and hoist her over your shoulder out of the blue, you should probably ask before you push my wheelchair.” Some of these things take practice to learn, or there is an element of trust that needs to be established. For example, one incident that I remember vividly is, chasing after my nephew in my manual chair. Next thing I know, a man was behind me pushing my chair. I shrieked, being rather taken aback, and he appeared insulted. He was not aware that he just invaded my space. My wheelchair is an extension of myself. It is my freedom. It is also my personal space. For goodness sake, someone even commented on my chair and stated, “Wow, she looks a little beat up. It’s almost like you live in that thing…” Read more
The tissue box.
It just a part of the room.
Yet you know why it sits there. Read more
I’ve been through a lot these past couple of months. Everything from personal matters such as losing my childhood friend and going on my first business trip to matters concerning my CADI waiver and disability services, new PCA services and ILS services hanging in limbo and then adjusting to new and hopeful changes. Read more
Sometimes when I tell people I work, they’re a bit taken aback. The first thing people typically ask is not “What do you do for a living?” but rather, “Do you have a job?”. The answer to that questions is yes, I actually have three jobs. All of which involve writing in some capacity, which I am grateful for. When someone learns that I am employed, their tone of voice typically changes. Almost like I have gained their respect. Which quite frankly, is rather disrespectful. It feeds into the idea that we can only contribute to society if we have a job. I say this as someone that works. I know how high the unemployment rate is for people with disabilities (see below). I’m incredibly lucky to work how and where I do, but not everyone is so lucky. For some, things just don’t pan out. I know exactly how that is. Others are medically unable to work. I know how that is as well, given my recent PCA issues as well as some health issues I’m currently addressing. Read more
They are the best. Cute little misspelled scribbles from my boy. There’s misshaped hearts and smiling faces, scribbles where mistakes were made. Read more
Sometimes I fear sounding like a broken record whenever I talk about ableism or disability issues in general, even though it pertains to so much of my professional and personal life. Disability factors into my life financially in many ways. Not only do I write about it here as a contributor, but I also write about it as a poet. Sometimes I feel a little…trapped. I know that I have a different perspective than that of my peers and perhaps I can encourage them to see things through a different lens. Even if it’s just for a moment. I fear talking about the “positive” too much because I worry about the potential of inspiration porn. I worry about focusing on the negative so much that my audience will mistake me for bitter as opposed to angry. Newsflash: I know I’m angry. Like Bruce Banner, I’m angry all the time. There is nothing wrong with that. Read more
I was talking with a mom last week during the IFSP (Individualized Family Service Plan) meeting, about getting her child into a stander now that he is approaching 9 months old. This little boy has increased tone in his extremities with decreased head and trunk control, very limited use of his arms and hands yet. Mom knew about standers from her private therapist; in fact they were also planning to try one in private therapy that same week we discussed standing. Mom was all ready to try one, but wondered what the stander was going to help him do. Read more
“Something struck me,” my friend said recently when I brought up an inaccessible music venue. “We have the privilege of not worrying about accessibility.” I never thought about it that way before, but being an abled-bodied person, she was right. I talk about ableism so much, but I’ve never considered how my friends blank on accessibility since they don’t have to worry about it. For the most part, I always find a way around inaccessibility though. When it comes to navigating shows and concert venues I’d like to think I have it down to a science. Read more
This week, Jennifer’s husband Bryan shares his recent experience as a father to a child with cerebral palsy enjoying a weekend at the waterpark.
One more time. I can do it one more time, I thought as I stood at the bottom of the stairs. Three flights up was the entrance to the water slide that we had just come down. It’s the only one he can do because we all ride in a raft and I can support Roa, who now stood in front of me squealing with joy from our last ride. Vicki, my sister in law, and Gunnar, my younger son, waited patiently. “Are you sure you can do this again?” Vicki asked. “Yeah, just need a minute to catch my breath”, I replied. Read more