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

 

The scary part of editing

Why did I write this book? It seemed like a good idea at the time I started writing, but now that I am editing, let us just say that there are moments when I feel like the book should be thrown into the garbage can and then the garbage can should be thrown into the center of an ocean. Or maybe just hit delete.

I like the character of my narrator and love the idea imagining what my life might be like if I didn’t have a disability and happened to be a vigilante. In my book, I can go anywhere, be anyone, do so many things that I can’t do in my real life. I can’t just hop on a plane and go to England or Paris or Egypt or Italy. In fact, I’m not able to fly anywhere right now because I don’t have a good way to bring along the equipment I need or sit in an airplane seat since there are no shoulder harnesses to help hold my body up.  And, there are places that would be cool to go to that just aren’t very accessible if you use a power wheelchair. Any travelling means lots of research to figure out if places will be accessible enough.

Also, in my story, my characters just talk effortlessly and don’t need to use a communication device. I am thankful for my communication device so I can communicate my own thoughts and ideas. It’s also fun to imagine if people could just understand my voice without it taking so long to type out everything I want to say.

Through my characters, I get to imagine a different reality.

So, back to editing. It is making me think about life.

p.s. It was actually easier to travel when I was younger because I had a seating system that could strap into a plane seat, wheelchair was less complicated to fix if it got broken,  and easier to carry me or my chair to inaccessible places. Here are some of our more memorable family vacations to Washington D.C., Florida, Yellowstone, Grand Tetons, and Toronto. I get a do-over to D.C. because that was the year I got the flu after the first day and spent the rest of the trip sick in the hotel room!

Justin, dad and brother at Santa Monica End of the Trail sign11-year old Justin with younger brother and dad, White House in backgroundJustin and dad with group of people on float raftJustin as a boy at top of board walk ramp with sandy beach and oceanJustin in front of Moose statue012375ef8a70833ae3e8b4e732d6fba202baa9f152

Discoveries

The toes report

Met with the orthopedic specialist on Friday. Surgery in the next month or two as soon as it can be scheduled. Basically, the muscle tone and uncontrolled muscle spasms in my feet have caused my big toes to be just shy of dislocated. I have really strong muscles! And as I’ve mentioned before, it’s as if all of my muscles have their own individual brains, none of which listen to the brain in my head.

Foot xray showing bent big toe

I’m going to have surgery on both of my big toes as the doctor thought it was just a matter of time until my right toe gets as bad as my left. I’ll be in the hospital for a night or two after the surgery. The whole thing involves cutting tendons to my big toes, shaving off some bone on the knuckle parts of my toes, pins for 6-8 weeks. And then I’ll have another quick sedated surgery to remove the pins.

What else to say? It’s going to probably be a long, painful couple of months. Hopefully, it’ll be less painful once I get through it all.

Which brings me to…

Auto-captions

I’ve discovered over the past several years that my auditory neuropathy (AN) and hearing loss makes it difficult to follow conversations. CART (real-time) captions and closed-captioning helps me better understand what’s being said. For every day conversations or doctor visits, that’s not really an option.

Google Live Transcribe icon

My mom’s coworker let her know about Google Live Transcribe app for Android and we’ve been trying that out for everyday conversations. We also used it at my visit to the orthopedic specialist on Friday. It is amazing.

What do I like about it?

  • The text size can be enlarged so I can see it. I have visual tracking issues so larger text helps me read more easily.
  • The auto-captioning with Live Transcribe is pretty accurate. My mom reads along and points out when something is inaccurate. Like when the doctor said 6 to 8 weeks but Live Transcribe wrote out 66 instead. 66 weeks of pins in my toes is very different than 6 to 8 weeks.
  • Being able to read what was being said helped me fill in the gaps for when the discussion was sounding like a statick-y radio, which is what happens often with my AN.

Which brings me to…

My Book

Editing is long, hard work!

 

I am done with my first draft of my book!

Exciting week for me. The first draft of the book I’ve been working on for the last two years is finished and it’s exciting. I proved to myself that I can write a book. Not sure it’s a very good book or that anyone would want to read it. But, I can write a book.

What did I learn about writing a book?

  1. It’s hard. Being persistent and sticking with it when I couldn’t find ideas for what was next was hard.
  2. It was good for me to write on my own. I didn’t want my parents or others to read what I was writing because I wanted to prove to me that I can do this. I didn’t want other people’s ideas or feedback to influence my story for my first draft.
  3. It’s time to take a break from this story. I need some time away before going back and starting to edit.

In the meantime, I have lots of just typical life stuff to deal with:

  • Meeting new case manager/social worker today since I’ve moved over to adult social services.
  • Health stuff (stupid toe!) – Botox is scheduled for Wednesday.
  • Need to do all the paperwork to move to the new Fiscal Management Support model for Consumer Directed Community Supports waiver. I mentioned this in a previous post about how now MnDHS is requiring clients to become their own small businesses to hire and manage their support staff. Lots of paper work involved!
  • Keep writing in my blog.
  • Stay warm because it’s like 50 below Fahrenheit here in Minnesota.

Hello 2019

In 2019 I want to write more about the challenges in front of me to keep moving towards independent living. It’s not easy to figure all this out and I’ll share what I find out in case it helps others in their own lives or just so everyone has a better idea of what’s involved. And, of course I’ll also be blogging about political issues impacting disability rights, weird random stuff and my experiences with accessibility.

As you know, I took a break from Twitter and Facebook to work on my book, mainly. It has been a couple of weeks since I started my break. I probably wrote about the same amount in my book than if I had been on Twitter and Facebook. So, maybe social media isn’t as distracting for me as I thought. I’m okay with not being sucked into the non-stop drama of our current political reality. But, think instead of a total blackout, I’m going to just limit my time on social media – maybe 15 minutes in the morning and 15 minutes in the afternoon.

Here is what I will be focusing on over the next several months because all of these things need to be in place for me to live independently. I love my parents but like any young adult, I really would love to live in my own place in the next couple of years. So, how do I get from here to there?

My first step is that I need to get my Consumer Directed Community Supports (CDCS) Medicaid/Medical Assistance waiver figured out. This is the funding that helps pay for my support staff, adaptive equipment not covered by insurance, etc. I mentioned this in a previous post, Minnesota Department of Human Services is now requiring me to create my own small business to hire and manage my support staff. My parents and I will be meeting with several different providers over the next several weeks to decide if we’ll stay with our current provider or switch to a new one. Then I’ll need to complete all of the paperwork to become a small business and rehire all of my current staff and have them go through background checks again. The provider I choose will handle the payroll but we also need to figure out how to protect me from liability as a small business (this is more than just worker’s comp and unemployment insurance!). There’s a lot to figure out and it has to be done and in place by March in order to keep having the choice and flexibility for me to hire my own staff. This may all sound confusing. That’s because it is. Thanks very much DHS for making my life more complicated than it already was.

Along with figuring out support services, I’m also trying out new ways to continue growing as a writer. I’m going to try finding a class to take either through someplace like the Loft Literary Center, White Bear Center for the Arts or an edX online class. This could be a fun way to stay connected with other writers and improve as a writer.

And, guess what? It’s almost time for the new legislative session in MN! I’m going to try to get to more of the Disability Days at the Capitol to continue my advocacy for disability rights. Just got my tickets to the Walz-Flanagan Inaugural event at the Orpheum. I’ve heard back about wheelchair accessibility and also have asked if there would be CART captioning.

And, I have a whole lot of doctor and therapy appointments coming up this month – one or two a week. I’m getting botox on my lower leg and foot that’s been so painful on January 9th. Hoping it works.

I’m also going to keep having fun listening to music, watching AFC Wimbledon football (soccer) matches, going to concerts, and hanging out with my family. My younger brother is graduating from high school this spring so life is going to have a lot of changes this year for all of us.

Happy New Year everyone!

2018, see ya

3 things I will always remember

  1. Door knocking for Ami Wazlawic – my new State Representative! I think I liked that even more than being a delegate at the State Convention. I think the parties need to think about how they’re endorsing candidates so that more people can be involved in the process.Ami Wazlawic and Justin Smith smilingKris and Justin smiling
  2. Spoke at Charting the C’s Conference – a lot of work but felt amazing to be the keynote speaker and to present in a couple sessions with my mom, Jennie Delisi and Kim Wee. It’s awesome to have the opportunities to share my experience with such amazing people! Justin with 2 womenJustin smiling with audience seated at tables in background
  3. Writing my unfinished first draft of my book and my blog – I even moved my blog to WordPress which I’ve found very accessible and easy to use. To write is to be free.Justin looking at computer

Read more posts about my favorite 2018 things

Volunteering and participating in political process

VOTE on 11/6 if you haven’t already

Midterms on Nov 6: Clear choice for me in Minnesota

Midterms Part 1: People with Disabilities Vote!

Why it matters

Vote! My letter to the editor

Adjournment

Ready to convene

Show Up and Dance with Me!

Charting the Cs Conference

I’m here and stuff

Video blog for my latest update

Writing

Writing with WordQ (NO POLITICS, really!)

Happy summer

Anyone else have this problem?

 

Random thoughts about feet & stuff

These past two weeks, I’ve been having thoughts on my feet and stuff.

  • My feet are a pain. And because of that, I am in pain. It’s a non-stop hard-to-be-distracted-from kind of pain. My mom asked me what number yesterday. Because that’s what my mom does. I said 5 to 7. I’m waiting to see my orthopedic doctor in about a week.
  • Pain makes me exhausted. It’s hard to hold my head up when I’m exhausted. When I’m in pain.
  • leg wrapped in pillow strapped in wheelchairHere’s the thing. I don’t stand, not even to transfer to/from my wheelchair anymore because it’s too painful. Ankle-foot orthotics (AFOs) never worked very well for me because of my strong uncontrolled movement – my feet fought the AFOs and eventually I said “no more.” So, now my feet, are misshapen, aching, bent, etc. I don’t know what’s next for my feet.
  • Okay – it just is – you get used to it – all the things I tell others and tell myself. You get used to it when you’re me. Yes, I deal with it. We deal with it. But, sometimes it really just does suck.

Other random thoughts:

  • I have 140 pages written in my book.
  • I went to the Legislative Update by the Minnesota Council on Disability on Monday afternoon to learn about different legislative efforts for the next session. Just because the election is over doesn’t mean there isn’t a lot of work to do during the upcoming session. It’s important to make our voices heard! Finally saw my picture with former Senator Dave Durenberger in the hallway between the Senate Office Building and the Capitol. Cool!
  • I took a short break from my social media break. I had to jump on Twitter for the Project 4 Awesome fundraising live video by Hank and John Green Friday to this morning. They’re my favorite vloggers (video bloggers) and authors. Maybe next year, they’ll caption the live stream, so that people with hearing loss, who need closed captioning, can be included. I love that they’re able to raise over $1.5 million for good causes and wish that they’d also caption the livestream.
  • Last Doctor Who for the season is tonight. Will recharge my DBS battery and watch my now favorite Doctor! This has been a great Doctor Who season! If you got tired of watching in the last couple of years, you should give it a go!