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

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!

What is up in my world?

Celebrate!

Hey, how awesome was last night’s Governor Walz and Lieutenant Governor Flanagan Inaugural Celebration?  Super AWESOME! Fun music, dancers, and so much excitement!

Selfie with Justin, mom and dad

Here are some of the picture highlights. Congratulations to Governor Walz and Lieutenant Governor Flanagan! I loved being a delegate for them in the caucus, organizing unit convention, and at the State DFL Convention. I loved volunteering however I could and writing blogposts in support of them and other political candidates and issues that I believe in.Justin, his parents, Lieutenant Governor Flanagan and Governor Walz

Time for #OneMinnesota where we ALL, including those of us with disabilities, have seats at the table!

 

Justin and man using wheelchair at inaugural celebration

The big toe annoyance

Justin dressed up and smiling

Update on my foot. I wasn’t able to have botox last week because I had a little cold earlier in the week so now it’s rescheduled for the end of January. When I get botox, I get nitrous oxide to help with the pain – can’t have nitrous when you’ve had a recent cold. I do have a dislocated-ish big toe and will need to figure out how to deal with that. First, we have to see if we can calm down the muscle tone with botox and then decide what’s next to fix the toe.

My red Acorn socks rock and look great with buffalo plaid for inaugural celebrations!

 

GOTV and CHVRCHES

GOTV

Busy week this week. For the first time ever, I went door-knocking with my mom. I’m hoping to get out more in the next month for Ami Wazlawik for MN State House 38B and my other favorites like Tim Walz for Governor, Amy Klobuchar, and Tina Smith for US Senate. Each of these candidates support disability rights and issues that are important to me, like affordable health care for all and protecting Medicaid.

So, get out and vote! Make your voice heard!

Chvrches

 

Another awesome concert at the Palace Theater in St. Paul. Chvrches was amazing and energetic! The wheelchair accessible seats at the Palace are great – no one can stand in front of me and block my view.IMG_20181002_205925370

As we get closer to winter, it’d be nice if they’d let those of us using wheelchairs enter by the shorter will-call line. There were really long lines and it’s easier for people in wheelchairs to get their spots before it gets too packed.

By the way, my Mom loves being able to type messages back and forth with each other on my communication device because it’s super loud and hard to hear when you’re at awesome concerts.

 

 

Governor’s Forum on 9/13 cancelled

I just got this cancellation yesterday for the Governor’s Forum that I was looking forward to going to on Thursday.

“Unfortunately, event cosponsors have had to cancel the event due to lack of confirmation from the candidates. We are still working to ensure that candidates for Minnesota Governor address and prioritize issues of importance to members of the disability community, and hope all of you will connect with candidates to share your personal stories as well.”

I feel disappointed that I won’t be able to hear from the candidates about where they stand on issues that truly matter to me as a young adult who depends on support services and Medical Assistance to live in my community.

As I said in my last post, we need a Governor and legislature that will do everything they can to protect services so that people with disabilities receive the care and services they depend on. Ask candidates what they will do to protect health care, Medicaid, and support services for people with disabilities.

We need to make our voices heard so that candidates know how important these issues are to the disability community!

Justin reaching out to air-fist bump with Senator DurenbergerI’m excited to read former Senator Dave Durenberger’s new book, When Republicans Were Progressive. He was most proud of the bi-partisan work to pass the Americans with Disabilities Act (ADA). I was so honored to meet him and present with him at last year’s MN Capitol Grand Opening Celebration (YouTube: my speech and Senator Durenberger’s speech). Listen to the Minnesota Public Radio interview with Dave Durenberger. It is a bipartisan book! Launch party is on October 16th!

Why it matters

Governor Candidates’ Forum on 9/13

There are some key issues that impact people with disabilities that I think everyone should be thinking about as they decide who to vote for in the midterm elections. I’ve said this in previous posts and will say it again – SHOW UP! It’s important to show up now and find out more about where candidates stand on issues that impact people with disabilities. On September 13th, I will be going to the Governor Candidates’ Forum on Disability to support Tim Walz who I caucused for last winter and supported in the State DFL Convention (check out my Adjournment post to see the news report I was featured in!). I believe that he will support the issues that matter to the disability community.

2 in 5 people have disabilities and 1 in 10 have severe disabilities. We are your family. We are your friends. We are your neighbors. We are your constituents. We are you, at the moment when you get a life-changing diagnosis or are in a crash where you may end up with a permanent disability. In a blink of an eye your life may become one where you need Medicaid or social services to help live independently in your community.

 

Health care and support services

I know that I say this every time I write about this, but health care is freedom for people with disabilities. Cuts to health care and Medicaid means losing freedom. Medicaid, known as Medical Assistance in Minnesota, is my lifeline for medical care, support staff, medical equipment and assistive technology that help me live a full life in my community. We need a Governor and legislature that will do everything they can to protect services so that people with disabilities receive the care and services they depend on.

Ask candidates what they will do to protect health care, Medicaid, and support services for people with disabilities. If they say that their goal is to cut human services – that means they’re trying to cut the very programs that I and others with disabilities depend on. Do you really want to vote for that person?

There are many other issues impacting people with disabilities, including affordable housing, transportation, employment, education, and finding qualified support staff. All of these issues are important to me as I carve out my adult life. These are the things that matter as I look at candidates and find which ones will also see their critical importance and impact on making sure that people with disabilities are not left behind.

SHOW UP Now!Justin shaking hands with Tim Walz with Peggy Flanagan smiling

If there are candidates you support, go volunteer for their campaigns. Put up some lawn signs. Write letters to the editor. Talk to your friends and family about why voting matters and what candidates you support. Go out and vote in November. SHOW UP!

Also, big shout out to my Aunt Kelly Smith who is running for State Representative in Kentucky. Proud of her and hope she wins! Kelly Smith For Kentucky website

 

Vote! My letter to the editor

My First Letter to the Editor published in White Bear/Vadnais Heights Press, August 8, 2018

This coming Tuesday, August 14th, is the primary election for governor in Minnesota. As a young person living with a severe disability, I know that the next election can have a huge impact on the disability community. I am supporting Congressman Tim Walz in the DFL Primary for Governor because I believe he will be able to pull people from across the state to protect Medicaid and improve education for all students across the state.

We need a Governor and Legislature that will do everything they can to protect Medicaid services that people with disabilities depend on to live in their communities. I’ll be voting for Tim Walz and Peggy Flanagan because they will work together to keep our state moving in the right direction even when faced with threats to Medicaid and other services that people with disabilities need.

Tim Walz was a teacher and knows the importance of making sure that education is inclusive and accessible for students with disabilities. Funding education, special education, and making college more affordable are important in making sure that all students are ready for the jobs of the future.

We need to elect a governor who can work productively with either party to get stuff done. The needs of the disability community do not change depending on what party is in control. Tim Walz will keep moving our Minnesota forward and make sure that those of us with disabilities are not left behind.