8 things to know

Here are 8 things to know when you go into surgery:

  1. Don’t eat or drink after the hospital tells you. For me – that means no food or drink after 10:30 pm on Thursday.
  2. My caregiving team (i.e. mom and dad) should bring a book because they have to wait while I’m in surgery. Mom, what a great time to read the draft of the book I wrote!
  3. Be clear with the doctors, make sure my parents and I understand what’s happening, and ask questions (watch To Err is Human). Use Google Live Transcribe so that I can better understand what’s being said because I have AN (auditory neuropathy & hearing loss)
  4. Plan on watching mindless tv shows or videos because you’re going to be really groggy and pain medicated. Hope that the hospital has the channels that Premier League football and Twins are on.
  5. Bring comfy easy-to-put-on clothes along because when you are discharged, you are going to want to get the f**k out. It’s less painful for me if I have easy-to-put-on clothes because I need other people to get me dressed because I have cerebral palsy (CP).
  6. If you’re staying overnight, don’t think you’ll sleep well because if you are either a light sleeper or a mom, you won’t get any sleep. Especially if you’re like me and have sleep apnea, the beepy thing beeps a lot all night long. And nurses come in and check your pulse, blood pressure, IV’s, etc. My dad is pretty good at sleeping just about anywhere.
  7. Hope that you are not in the hospital for more than two days. The last surgeries I had for putting in my DBS (deep brain stimulation), I was there for a week. That was more than long enough for me!
  8. Get a gallon of coffee because if your parents/guardians/friends/partners are anything like my mom, they are going to need lots of coffee. Thanks to Ronald McDonald House for helping take care of the caregivers and having good coffee for my mom and a nice place for my dad to get breaks, too.

I will have one more post by Wednesday at the latest, going more in-depth about the surgery the doctor will be performing on the big toes and then my mom is going to do a guest post after the surgery. The photos shown are of me in the hospital when I had my DBS surgeries 4 and 5 years ago (yes, did this one twice + one time to have the first one removed!)

Another song for my hospital playlist: Brave by Sara Bareilles

“Maybe there’s a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is”

Dad holding Justin in hospital bed

Tearing at the seams

Perfect paradise, tearing at the seams.

– Imagine Dragons

One of my favorite bands, Imagine Dragons, has this line in Bad Liar. When the song came out, I was in a place of pain and this helped me forget. This was actually last fall and the pain has been at a steady 6 with jumps to 9 out of 10 for so long. Just to recap –have seen multiple specialists over the past 5 months figuring out what to do.

My surgery is now two weeks away on April 26th. I’ll have two months of pins in both of my big toes and recovery with lots of lying around in bed, watching Netflix, Amazon Prime and On Demand. For the next couple weeks, I’ll be putting together my playlist for the hospital – the music that makes me feel strong!

I am going to have my mom post as soon as she can after my surgery to let everyone know how I’m doing. Justin smiling with concert crowd behind

So look me in the eyes
Tell me what you see
Perfect paradise
Tearing at the seams
I wish I could escape it
I don’t want to fake it
I wish I could erase it
Make your heart believe

-Bad Liar by Imagine Dragons

 Bad Liar on YouTube How awesome that it’s captioned!

Previous posts about toe-mageddon

The Interrupters up close

Amazing concert on Wednesday at the Varsity Theater! Can’t even describe how awesome this concert was! The pictures say it all – this band is energizing and exciting. Justin and dad in front of theater marquis for sold out Interrupters April 3After the last song, the band threw t-shirts, drumsticks, guitar picks, and sheet music out to the crowd. The lead singer, Aimee, saw me and brought me a hat! And I got a hug – after she asked if it was okay to give me a hug! It’s always good to ask!

You’ll never believe this – the manager noticed us and asked if we’d like passes to meet the band after the concert. I still can’t believe it!

We hung out while the crowd left. And then got to meet the band – who by the way are incredibly nice and cool! They didn’t know it, but it’s going to be a rough several months for me after my foot surgery in 3 weeks. This concert and meeting them, is going to make it easier to go through the rough times. Thanks Aimee, Kevin, Justin and Jesse! Never underestimate the impact you have on people who are going through hard times.

Fight like a title holder 
Stand like a champion
Live like a warrior
And never let ’em break you down

Title Holder YouTube video

Finally, the Varsity Theater in Minneapolis was very accessible for me. After getting our tickets sorted out, we went to the reserved spot that was right up front to the left of the stage. We didn’t check out the accessible bathroom so can’t report on that. My chair elevates so I raised it up to standing height and it was amazing to be so close to the stage. The security guys were awesome – gave us water and earplugs and were really nice.

Interrupters on stage

Can’t wait to see the Interrupters again. Maybe Duluth in July??? Hopefully am recovered from surgery by then!

Find out more about the Interrupters and their concert tour on the Interrupters website.

Justin and Kris in concert crowd

To Err is Human

I watched a documentary, To Err is Human, with my mom and dad last weekend. Like Cal Sheridan, who is featured in the film, I also have kernicterus because of a medical error. Did you know that medical errors are the 3rd largest leading cause of death in our country? There are as many as 440,000 preventable deaths every year. Far more than that are living with the long-term impacts or injuries from medical errors. For me, it means severe cerebral palsy, auditory neuropathy, visual tracking difficultiesBlack and white photo of dad holding baby Justin, and some messed up toes. Had my newborn jaundice been tested and treated in time, I may have had a very different life. But, it wasn’t – and I don’t have that different life.

Watch this documentary and find out more about what we can do to improve the medical system so that it’s safer for all of us. We NEED to do this!

Surgery

Speaking of medical stuff, my toes surgery is on April 29th  with a night or two in the hospital. My mom is going to write a guest post after to let everyone know how I’m doing. I’ll have surgery on both big toes with a couple months’ recovery. Hoping for relief from the toe-pocalypse although I also know that surgery and recovery will mean it’s going to get worse before it gets better. Foot xray showing bent big toe

Interrupters

Until then on to crazy fun April starting with Interrupters concert tomorrow night!!! Favorite songs: She’s Kerosene and Got Each Other (featuring Rancid)

We don’t have much but we’ve got each other! 

 

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!