Being a So-called Broken Record

Being a So-called Broken Record

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

Remembering the Why of Standing

Remembering the Why of Standing

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

Summer Shenanigans Survival Guide

Summer Shenanigans Survival Guide

“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

One more time

One More Time…

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

Casual Ableism and Good Will

Casual Ableism and Good Will

There is such a thing as causal ableism. It’s insidious, such as someone offering me up a prayer and leaving me perplexed as to why they are praying for me. It’s someone telling me “If I were you, I’d probably wear sweatpants all day because I could get away with it.” It’s forgetting when a venue or restaurant has stairs. For the most part, I know there’s no ill will, but unless we confront it when it’s encountered, microaggressions and all, we will not get anywhere. Read more

I'm Not Going to Answer That and That's Okay

I’m Not Going to Answer That and That’s Okay

I’m not going to answer your questions, and it doesn’t make me a bad person. Read more

Neglect and Powerlessness

Neglect and Powerlessness

It’s 7:00AM. My alarm went off at 6:15AM. My bus for work comes at 8:45AM. Forty five minutes later and I still hadn’t received a phone call. I am unable to go to work. My PCA didn’t show up. I am unable to reach a phone number, get an office voicemail. Read more

The Stigma of Chronic Pain

I’ve touched on the stigma of chronic pain in an article previously, as well as the “Super Crip” complex that I’m desperately trying to rid myself of. I have yet to address the stigma of taking medication for said pain though. So many people do not understand how spasticity works. Hell, I’m still learning about my disability and I’ve lived in this body for twenty-six years now. I have had to turn down Vicodin, and many other medications due to my own fear of becoming too reliant on these medications and leading down a dangerous path. I have some family members that talk about “Big Pharma” and preach yoga as though it is the be all, end all, neglecting to remember that I take over five medications every day to function as my truest self. One who is relatively free of pain, and happy. I know that my loved ones mean well, but it’s rather insulting. They fail to understand that while I agree some prescription medications are pushed onto patients with too little thought, medication, physical therapy, yoga, and meditation can and do coexist rather peacefully within my life. Read more