Seat at the table in #OneMinnesota

On Monday, I went to the Legislative Forum sponsored by the Minnesota Council on Disability. Governor Walz and Lt. Governor Flanagan were both there – the first time that a Governor or Lt. Governor has come to this Legislative Forum. It was also great to hear from the legislators who were there to talk about what’s coming up this session and to listen to disability advocates about issues important to us.

My communication device had some technical difficulties so I wasn’t able to ask the questions that were important to me. Here are some of those questions:

How might we:

  1. Create more affordable, wheelchair accessible housing?
  2. Explore creative options for co-housing communities to include people with or without disabilities?
  3. Expand the use of Consumer Directed Community Supports (CDCS) so people with disabilities have more options and choice for living independent lives? CDCS allows me to choose my own staff and pay them livable wages. But, my case manager says that if I switch to traditional Provider PCA services, that I’d get a 25% increase in my annual budget. This isn’t fair – why do people using CDCS get smaller budgets?

First Avenue Tonight for #Current15

Tonight – I’m off to First Avenue for the Current’s 15th Anniversary show. Thanks to the Current for giving me tickets! Super excited – my first time going to First Avenue! I’ll let you know more about accessibility at First Ave and how the show was tomorrow! In the meantime, check out Mary Lucia’s interview with me about accessibility at local music venues. Talking Accessibility @ The Current

2020 Goals

I don’t do resolutions for the New Year, but I do have a ritual where I write the goals of what I know that I can accomplish.

Politics

I am extremely excited for this election season because we get to choose who our elected officials are – from my local representatives to state and US representatives and senators and President. I’m also nervous for that same reason and lots of other reasons. Participating in the political process matters because the people we elect make decisions on laws and policies that impact people with disabilities. Elections matter! I will be doing a lot more posting about this leading up to November which brings me to the next goal which is…

Blogging & Writing

It brings me great joy to get the word out about living with a disability and I want this to be a community-building effort. So, please like, retweet, share on Facebook, and comment on my posts. This is what helps us all connect. It also helps me know that my voice matters.

So, I see my blog and writing as my vocation. Yet, it’s an unpaid vocation. I would like to explore how I might earn a little income from what I love to do. Something I’m going to do in the next year is look into how I might monetize my blog. There are pros and cons to this and I am going to look at all sides before I make my decision.

This has been my joy of my life to write. Without writing, I don’t know what I would do. So expect lots of blogging from me this year. I also have a goal to finish the novel I’m writing by Valentine’s Day. Then will start editing in the spring.

Living life

Finally, and this is an ongoing thing, continuing to explore and figure out along with my parents, how I will live independently.

Check out one of Chris Serres and Glenn Howatt’s recent article for why this is so difficult to figure out: Disabled Minnesota residents often live in costly isolation. You can check out my blogposts from last year about what I would like to see in my future:

In the next several months, you can find me at my computer, a concert, a rally, primary, or caucus! Happy New Year everyone!

 

Another Justin

I am extremely excited that my friend, Justin Stofferahn, is running to be my State Senator (SD 38). I met Justin at a Walz event in 2017 and got to know him through the caucus, district convention, State DFL Convention, and in volunteering for Governor Walz and my State Representative Ami Wazlawik.

I know Justin will be a great Senator. He listens – truly listens. He made sure that I was at the table and that I was able to share the issues that mattered to me. He reaches out to make sure that people with disabilities and others are included in the process. I am confident that when he becomes my Senator, that I’ll be able to connect with him on legislation that impacts me and others with disabilities. And that he’ll not only listen, but will act.

‘Tis the season for writing more about political issues impacting people with disabilities as we near next year’s election. Start finding out now who is running for local offices – don’t just follow presidential politics. State and local politics is incredibly important and has very real impacts on people like me who need services and support to thrive in my community. Pay attention, show up and be informed!

Looking forward to adding Justin’s sign in our yard and his pin the back of my chair! #OneMinnesota

Find out more about why I think getting involved in the political process is important. Check out this blogpost with link to the Rochester ABC Channel 6 news report from the DFL State Convention: Adjournment

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! 

VOTE on 11/6 if you haven’t already

This will probably be my last political post until next year. Or not.

In last Tuesday’s blogpost, I said I was going to vote for Minnesota Democrats Tim Walz and Peggy Flanagan, Tina Smith, Amy Klobuchar, Betty McCollum, and Ami Wazlawik. But, I want to be clear that I am not voting for Democrats because I favor a political party over another. I am voting for Democrats because they tend to support issues that matter to me. They support protecting Medicaid, disability rights, and healthcare.

So, here’s your job. Find out where your polling place is, research who is running for office, get out and VOTE. In Minnesota, you can use the Polling Place Finder to find out where to vote. For other states, check out Rock the Vote to find your voter information.

Our votes matter!

Here are some more posts about the issues that matter to me:

Why it matters

Vote! My letter to the editor

Ready to convene

Tax Cuts and Jobs Act

On the Issue of Disability Rights: Healthcare