Talking Accessibility @ The Current

Wait, what?

Ok, this was a big awesome week! Unbelievably big and awesome!

Who knew when I wrote my last post about seeing Maggie Rogers and accessibility at the Armory, that Mary Lucia from Minnesota Public Radio’s The Current would reach out and ask to interview me? Of course, I said yes – anything to raise awareness of inclusion and accessibility in everyday life, which includes going to see live music.

If you haven’t already, Listen to Looch and share with your friends, family, and music lovers! Next time you go to listen to live-music, check out ADA options and see if you’d want to sit there.  As I mentioned in the interview, according to the Centers for Disease Control (CDC) a quarter of our population has a disability – accessibility and inclusion for all matters!

Feel free to share your experiences of accessibility in live-music venues and keep the conversation going. Big thanks to Mary Lucia and Luke Taylor for reaching out and bringing light to this issue.

Listen to Looch: talking with Justin Smith, music fan and accessibility advocate post on The Current website

Listen to Looch Interview with Justin Facebook post

Listen to Looch Interview with Justin on YouTube

Lastly, change up from my regular red Converse. These are awesomeness. Just an all around awesome week!

Black and white checked Van tennies

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

Appearances may be deceiving OR how something might appear accessible but in reality…

Here’s a quick story of what was to be a short walk with my mom, on a lovely sunny day,  to the new accessible little park down by the lake. And when I say accessible, I mean NOT really at all accessible for me or probably any other wheelchair user. In fact, they probably could have left the curb cut out because people are only going to get more stuck the further they go.

Part 1 – “Lovely day for a walk to the lake”

Says my mom, all the time! It’s a holiday in the U.S. so I went along. I drove my chair while my mom tried to keep up. I wasn’t even on the fastest speed.

Part 2 – Look the newly redone little park even has a nice curb cut

Says my mom. One car and bike go past and the next car stops to let us cross the street to the park. Mom takes a couple pictures because really, it’s nice that our township redid this park and tried to make it more accessible. Right? We should post and tweet about that, it’s a good thing.

Justin in wheelchair on curb cut with path to lake ahead

Part 3 – ZZZ WRONG!

We start our way down the black, rocky path which is wide enough for a wheelchair. So, that’s good. My wheels begin to sink as we near the bench. We maybe should have stopped here. But, thought it would be easier to turn around if we went down to the turns or to the bottom of the path. Again, WRONG! We got to the lower turn on the path, and my drivewheel was spinning deeper and deeper. I was spectacularly stuck.

Justin in wheelchair with wheel sinking into rocky path

Part 4 – Dad to the rescue

Mom can’t get me unstuck. Mom calls dad. Dad drives the several blocks to the park. Dad also thinks maybe we can get turned around on the larger rocks at the bottom of the path. Both mom and dad are able to help drive and push me to the bottom. I didn’t go into the lake. I swore. Dad swore. Mom maintained her calm, positive outlook on the situation. Dad gets me out of my chair and carries me back up the path where my mom holds me on the bench. Reminder for all, I use a wheelchair, because I am not able to sit independently, let alone walk. My dad wrestles, pushes, drives, swears his way up the path with my chair until he passes us on the bench and gets it back to the solid curb cut. Mom and dad carry me from the bench back to my chair. (Sorry, no pictures of dad pushing chair since mom was holding me on the bench and dad was pissed – imagine the pictures we could have taken!)

deep tire tracks in rocky path

Part 5 – MOM, YOU’RE INCORRIGIBLE and when designing for accessibility, perhaps someone should do some user testing to see that it’s actually accessible

Nothing more to say about adventures with mom part. Really, I do love my adventures with my mom. Even though we seem to get stuck at times…

Whoever designed this park and whoever from our township thought they were making a park that was wheelchair accessible were wrong. I doubt that anyone tested this out with an actual human being who actually uses a wheelchair. I use a power chair and the path failed horribly. I don’t even know how someone who is using a push chair would make it on this path. It’s not packed down solid enough.

The flowers are lovely… I just don’t get to see them up close, anymore.Justin smiling with park and lake behind

NEXT ACCESSIBILITY CHECK: Maggie Rogers concert at the Armory in Minneapolis later this month.

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

 

Barriers to Inclusion Part 2: Caregivers

The system is stuck! Why aren’t Consumer Directed Community Supports (CDCS) options on a level playing field with traditional Personal Care Attendant (PCA) Services? We need to rethink the model and provide real options and choices without being penalized for choosing CDCS, even though that’s the choice that provides more flexibility and choice for the consumer. And why are these the only 2 options for staffing that I know of? What about cooperative staffing models where people with disabilities are the ones making the choices and decisions?

How am I penalized?

Having me become a small business to use the CDCS program still seems crazy to me and my parents. Even with the assurances from MN Department of Human Services (DHS) that simply having unemployment and worker’s comp insurance protects me, we think there is greater liability for me now with this program. If anyone claims worker’s comp or unemployment, I will have to pay a higher percentage rate as a small employer because it’s no longer shared and spread out among a large pool of employees.

We have been told that if we switch to traditional PCA services I would receive 25% more in my annual budget. We wouldn’t be able to set the pay for my staff using this option, though, and would lose some of the control and options for managing my staff. I don’t want to risk losing great staff because they’d get a pay cut going to this model.

I am approved for 24-hour care and under CDCS, I only receive enough budget for about 1/2 of that care. How am I supposed to live independently when I don’t have a caregiver budget that covers the 24-hours of care I need? No nursing home or group home, please!

Why do I stay with CDCS?

  • I am able to pay my staff better wages than they would receive under traditional PCA services.
  • I get to choose who works with me. I am able to hire people who are tech-savvy and can help out with all of the assistive technology that helps me do what I need to do.
  • Because of this, my caregivers work with me for a long time. I have one caregiver who has been with me for 15 years. And another for over 10 years. I’m fun to work with!

Creativity, anyone?

I need and am approved for 24-hour care, but get funding for half of that. We need to rethink models for this. I’d love to partner with others who live nearby – kind of like a staffing cooperative, where we, the ones with disabilities, are still able to select our own primary staff and share our overnight staff. And then hire a coordinator to help with scheduling, payroll, share overnight staff, and provide on-call backup staff in case anyone is sick.

Co-housing options seem like they’d be a great idea for having people with and without disabilities living together. We could have community gatherings so that I’m connected to a larger network of people. It’s very important to me, that I don’t live in segregated housing. I do NOT CHOOSE to live in a group home. Lots of people with disabilities use housing assistance and Supplemental Security Income (SSI), so co-housing would need to be okay with that. I don’t know how any of this would work, but there are probably people out there who do.

If there are several others living in a co-housing community who have caregivers, we could form a staffing cooperative to share in overnight staffing and have back-up on-call staff. That’s one of the scariest things, is knowing that at any time, someone can call in sick or not be able to work. If there’s not a backup, then what? I don’t get out bed, go the bathroom, or eat or drink that day? Right now, my parents are there, but what about when they aren’t? I really want to live independently within the next 4-5 years, just like any other young adult.

Interested in figuring this out? Or exploring co-housing or cooperative staffing models? Contact me on my Contact page  and lets start a movement! This is our next step, figuring out how we can do something like this.

Minnesotans with disabilities Star Tribune article

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!

Disability rights are human rights! Inclusion matters!

Barriers to inclusion

Today, Chris Serres, reporter for the Minneapolis Star Tribune, wrote an excellent article about how Minnesotans with disabilities are fighting barriers to inclusion and unfilled promises. I love seeing Chris Serres’ articles because he gets it. He’s able to tell the world about what it’s like to try to navigate this system and what happens when the system fails people with disabilities.

This week, I’m going to be sharing my experiences and thoughts about inclusion, services, and moving towards independence, all in three action-packed posts. I am trying to navigate this system and learning as I go. It’s not easy to figure out a path towards independent living as the system is set up now. I am not an expert in all of these services and options but will offer my ideas on what I think would make sense for me as I, with the help of my parents, try to figure out my future.

Part 1: Inclusion

This is my definition of inclusion: a community of diverse backgrounds embracing each other in open minds and open hearts. I’ve written a lot about this in the previous posts. I want to live with as much choice and independence as possible. Isn’t this what anyone would want?

For inclusion to happen, I need to have services and supports in place that help me live the life I want to live in my community.

  • Caregivers are critical for me to live an independent life. I need 24-hour care and receive funding to cover about half of that care. We need to rethink models for care giving and independent living. I’d love to partner with others who live near me – kind of like a staffing cooperative. And what about inclusive co-housing options that include people with AND without disabilities?Do not miss Part 2 tomorrow!Man with arm around Justin, We belong in the community sign hanging on front of Justin's wheelchair
  • What is my path to employment or giving back to society? So far for me, that has meant taking some college courses, writing my blog and book, and having some amazing opportunities for public speaking. But, I have no idea what’s next in my path to an actual job. Read more about this in Part 3 later this week.

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!

Disability rights are human rights! Inclusion matters!

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