Category: Advocacy

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.

Done!

Did it! 1st draft of my 2nd novel is done!

When I started my second book, I wanted to do this narrative as a twenty-one-year-old who is looking back on the time when she was sixteen. For the narrator, I draw upon my own experiences of having cerebral palsy, using a communication device, power wheelchair, uncontrolled movement and jerky muscles, etc.  All this wrapped in a story of mystery and comedy and light.

“Until the lights die, let the story about yourself be your own personal story and no one else’s.

Until the lights die, we don’t know when we will shine. Until then, live.”

– Justin Smith

Read my earlier post about The novel

Justin smiling,Word document on computer screen says "The End"

Justins for Justin

Another exciting moment this week was introducing my friend Justin Stofferahn at his State Senate District 38 Kickoff. In all the drama around the presidential caucuses and primaries, don’t forget how important your local and state races are! I’m doing what I can to help Justin get elected as our new State Senator and flip our district blue. This race matters. This election matters. It’s important for all of us to get involved – because, you guessed it – it matters!

Find out more about Justin’s campaign at JustinStofferahn.com

 

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