Just super

A couple thoughts for this week.

I’m stuck

I’m not exactly endorsing any democratic presidential candidates for one reason: TOO MANY CANDIDATES with things I like and dislike about each of them! I think I’ll be deciding when I get to the voting booth on Super Tuesday. No matter who you support, show up and vote.

And if your candidate doesn’t win – support whoever does and show up and vote in November. Don’t forget about elections for US Representatives and Senators, state and local races – all of these matter.  I know that I said those words before… as a disability rights advocate – these races all have very real impacts on my future!

 

Coronavirus

Stuff like this always makes my mom nervous. I can have a hard time when I get sick – takes me longer to fight off sickness. So, for me, I need to make sure that my caregivers are healthy, and I stay healthy. One thing to think about is that caregivers don’t make a lot of money and may not have a lot of sick leave. It’s easy to say, just stay home if you’re sick – but that’s not reality for a lot of people who don’t get paid much and may have no or little paid sick leave. Just something to think about… because that describes a lot of personal care attendants and support staff for people who may be whacked the hardest by this virus.

By the way, the picture below is from our family vacation to D.C. in 2009. The day before I got sick with what was probably H1N1, I was touring the White House when I started getting sick. I still need a do-over trip to  D.C. someday.

11-year old Justin with younger brother and dad, White House in background

Let the editing begin

Starting to edit my book this week. I’m super excited because I care about the characters. I’ve missed them this past month!

That’s it for my super thoughts this week. Vote on Super Tuesday if you live in a Super Tuesday state. And wash your hands!

Justin at computer

Plotter or pantser?

I have started planning the next book and I mean that quite literally. I say that because I pantsered the last two books. Although I didn’t know this, I think that I might actually be more of a plotter.

Wait, what is a pantser and plotter?

Ok, when I wrote my first two books, I had an idea of what kind of story I wanted to write, but I had no outline for the books – this is referred to as “pantser” as in fly by the seat of your pants. This makes it harder for me to edit because I don’t have an outline for the novel and made it difficult to get unstuck when I had writer’s block and not sure what direction to take the story.

I’m outlining everything in the next book – this is referred to as “plotter.” So, for my next book, when I draft, I have my map to go back to. The nice thing about a map is that I can stay on the path I charted out, but there are lots of possibilities of how to get to my destination – and if I get started down a path that’s not working for me – I can always change where I’m going. But I have a starting point, a general idea of where I’m going, and what I’ll find when I get there.

Wait, what about the book I just finished?

In my last post, I said that I just finished the draft of my book and I’m taking about a month off and then will start working on editing. I couldn’t wait on outlining my next story though because the ideas are bursting in my brain.  Don’t worry, I’ll be hard at work on the Until the Lights Die (my own unofficial title) draft.

One cool thing, if you’re a writer, author, aspiring anything – check out NaNoWriMo.  My friend, Annie, told me about this organization last fall and I love the community of writers. When I posted on the NaNoWriMo Facebook group that I had finished the first draft of my book – I had 185 messages of congratulations, and 2.1 thousand likes within hours. WOW! What a great community for encouraging writers to keep going. We have important stories to share with the world!

Wait, do I ever take a break?

Yep, fun concert last night at the Fine Line. Saw Weathers and Echosmith.

This Tuesday, 2/25/20. will be a busy day for advocacy – another thing I love! Disability Day at the Capitol is in the morning and a great way to learn about issues impacting people with disabilities.  Find out more about the event on The Arc Minnesota 2020 Disability Advocacy day site.

Man with arm around Justin, We belong in the community sign hanging on front of Justin's wheelchair

And don’t forget, if you live in Minnesota, the Precinct Caucus is this Tuesday. Why is it important to go to your caucus? For me – it’s supporting my awesome State Representative Ami Wazlawik and supporting Justin Stofferahn who is running for my State Senator. Time to flip our senate seat blue! It’s not all about the presidential election – local politics matters! It’s an important year – get involved!

That’s all for this week.

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?