My Yellow Wallpaper

The Yellow Wallpaper, by Charlotte Perkins Gilman, is a short story about a 19th century woman who probably has depression due to having a baby. She is forbidden from socializing, writing, pretty much doing anything by her “psychiatrist” husband who prescribed a “rest” cure. Mental health treatment in the 19th century sucked! So she is forced to stare at the yellow wallpaper and finds herself becoming even more despondent. The yellow wallpaper becomes her symbol of the woman and the many women at that time being trapped in society’s expectations.

This story and John Green’s Crash Course episode about The Yellow Wallpaper, got me thinking about what my yellow wallpaper was. For me, it was Transition Plus. After high school graduation, many students with disabilities go to transition programs until they’re 21 and I’m sure many students and parents find them to be a valuable option to continue working on educational goals.

I was 18 years old and found myself going every day to a single room located in a building in a business park a couple miles outside of town. That was where our Transition Plus program was located. At the time, it seemed like a good way to get ready for college. But, I found the classes were remedial, didn’t seem very interesting to me, and I was bored.  I sometimes felt like I was looking on the outside of myself in there. I despised that feeling where I was so despondent and felt trapped even though my para and teachers were trying to make it work for me. Part of the reason was because I was in this segregated building and I wanted to be included with the outside world. This isn’t what I thought I’d be doing. My friends were going off to college and I was in a place I didn’t want to be.

I’m not taking anything away from people who find these programs helpful in transitioning to life after high school. And, the staff were great and trying to do everything they could to help me like Transition Plus. But the first time I wheeled into that building, I felt anxious and depressed. I wanted to get the heck out of there and never look back. I couldn’t get past feeling trapped in a place and life that I didn’t want to be in. I did get everything in place to start taking classes at Century College that spring, but still had to go to that single room in that building outside of town until I said “no more.” I quit Transition Plus that spring and never looked back.

My yellow wallpaper is exclusion. What is your yellow wallpaper?

My ideas for improving my Transition experience

Why not have transition programs that are located in our public college and universities? I just needed a para to help me during my college classes while at the college. That would have been my least-restrictive environment to continue working on my individual education program (IEP) goals.

Next up

MAGGIE ROGERS at the Armory! Can’t wait to hear this favorite in person!

Light on video

Would you hear me out

If I told you I was terrified for days

Thought I was gonna break…

Oh I am finding out

There’s just no other way

And I’m still dancing

At the end of the day

If you leave the light on

Then I’ll leave the light on

Summer

My brother’s graduation

My brother is a high school graduate and I couldn’t be prouder…oh, wait, that is what my mom would say. I truly am proud of my younger brother for graduating. My younger brother is awesome and I am proud to call him my friend. Through nerf sword fights and surgeries, he has always been there. He is awesome without having to try.

Justin, dad, graduate brother with cap and gown, mom and Grandma all smiling

Summer things to do when you use a wheelchair

Summertime heat is pretty hard on me. My type of CP means I have lots of uncontrolled movement which means my life is kind of like a non-stop workout. So, I like doing cool stuff in the summer.

Some of my favorite things to do include:

  1. Go to a baseball game. If you’re in Minnesota, both the Twins and Saints games are fun. Get shady seats.
  2. Go to a futbol game. Again, in Minnesota, we now have a new Allianz soccer stadium. Again, get seats in the shade.
  3. Find hiking trails. I put this one in for my mom because she’s the one who likes to drag me out on hikes. Fresh air, sunshine, blah, blah, blah… There are a lot of nice paved trails in our state and local parks. I usually have to go somewhere to hike, because we don’t live in a walkable community – no sidewalks and narrow roads aren’t great for wheelchair users.
  4. Movies if it’s in the 90s and/or humid. What movies are you looking forward to this summer? Up next for me is the last in the X-Men saga: Dark Phoenix.

Marketfest Bears that Shine

If you’re in the White Bear Lake area on Thursday, I’m one of 22 Bears that Shine. We’ll be getting recognized at the main stage at 7:15. For more info check out the Manitou Days Facebook event page. Hope to see you there!

Barriers to Inclusion Part 3: Employment

In the 2018 fiscal year, 16 percent of Minnesotans with disabilities who received state services worked in the community alongside people without disabilities.  Chris Serres, Star Tribune, 3/16/19

How is this real? That number needs to be a hell of a lot higher than 16%. I am NOT one of the 16% by the way… although I did get paid to be a keynote speaker a year ago. That was my first and only paid work.

We have to rethink what employment looks like and be open to a variety of work options for people with a wide variety of abilities. For example, I want a part-time job with the option to work from home. I love to write and advocate for disability rights and am good at public speaking. I love testing out assistive technology, applications, and pretty good at using WordPress. I have a lot to offer, it just takes me longer to do what I want to do.

I think it’s time to rethink traditional college and how some of us with disabilities can get our first jobs – especially those of us with severe physical disabilities. I’ve written about this before, but the amount of time and energy for me to take just 1 college course is a lot. One college course means that I have very little time for doing anything else like writing in my blog, getting out in the community, advocating for disability rights, or more importantly going to concerts. I’m not sure it’s the best use of my time and would take me about 8 years to get an Associate’s degree. So, what kid of job am I going to get without a degree? Or do I need to create my own kind of work because when I’m not a college student, I don’t get to do internships or have those other entry points into the writing or communications work I’d like to do.

Smiling Jennie Delisi, Jay Wyant, Kris Schulze and Justin Smith

Let’s all get more creative and figure out how we can connect people with jobs, especially those of us who aren’t following traditional paths.

Read the article Minnesotans with disabilities fight barriers to inclusion, unfilled promises by Chris Serres. Really, read it right now! And share with all of your friends, family and random strangers!

And read the first two parts of my Barriers to Inclusion blog post week. Really, read them right now! And share with all of your friends, family and random strangers!

Barriers to Inclusion Part 1: Inclusion

Barriers to Inclusion Part 2: Caregivers

Here are a couple of  posts from a younger me related to college and work:

20

Inclusion in Action

Random Thoughts

Justin in wheelchair with movie lights, 2 men looking at him with video camera

 

Hope. Grace. Kindness.

On Monday, I got to go hang out and volunteer with my young friend, Roa, who also has cerebral palsy. He’s in elementary school and reminds me of me when I was that age. I remember playing hide and seek in those same hallways during recess when I was his age. In the winter, when my wheelchair couldn’t get through the snow outside, several other kids would stay in and play hide-and-seek in the school hallways with me. I bet we disrupted lots of classrooms because I have a contagious laugh!Boy and young man driving power wheelchairs in school hallway

I didn’t really ever know anyone with CP or a physical disability when I was growing up. I think it would have been easier if I had had a mentor in elementary school. Just to know that I wasn’t alone. Thanks to my former therapists and teachers for connecting me with this amazing young man.

He has a grace in him that maybe people don’t always see. I see him. I see the boy who smiles, whose eyes light up, who is driving his chair faster and more independently than when I first met him two years ago and is getting so much better at using his communication device. He likes telling jokes which is something I loved to do in elementary school!

Sometimes we all need kindness and hope and grace. I find it when I get to hang out with Roa.

Happy holidays to you all. Wishing you all hope, grace, and kindness.Justin and Roa giving each other high five