Hope. Grace. Kindness.

On Monday, I got to go hang out and volunteer with my young friend, Roa, who also has cerebral palsy. He’s in elementary school and reminds me of me when I was that age. I remember playing hide and seek in those same hallways during recess when I was his age. In the winter, when my wheelchair couldn’t get through the snow outside, several other kids would stay in and play hide-and-seek in the school hallways with me. I bet we disrupted lots of classrooms because I have a contagious laugh!Boy and young man driving power wheelchairs in school hallway

I didn’t really ever know anyone with CP or a physical disability when I was growing up. I think it would have been easier if I had had a mentor in elementary school. Just to know that I wasn’t alone. Thanks to my former therapists and teachers for connecting me with this amazing young man.

He has a grace in him that maybe people don’t always see. I see him. I see the boy who smiles, whose eyes light up, who is driving his chair faster and more independently than when I first met him two years ago and is getting so much better at using his communication device. He likes telling jokes which is something I loved to do in elementary school!

Sometimes we all need kindness and hope and grace. I find it when I get to hang out with Roa.

Happy holidays to you all. Wishing you all hope, grace, and kindness.Justin and Roa giving each other high five

I’m not asking for a miracle

One of the songs I like by CHRVCHES is Miracle. I’ve been listening to it over and over. And over. And over lately. I’m not asking for a miracle but I, and my parents, are struggling with what comes next. What does my adult life look like? Especially socially, because right now, I’m feeling kind of isolated.

I’ve had some great opportunities to speak at different conferences and speak out about disability rights. I’ve made some awesome professional connections. I’ve gotten involved politically and made some wonderful connections there, too.

But, day in and day out, I feel kind of lonely. I hang out with my support staff who are awesome. I don’t really have any friends that I hang out with, though. I read books and watch movies and shows about young people hanging out. That’s rarely been my world. The last time I had friends that I hung out with was with my church youth group – they all went off to college or on with their lives. How do you meet new friends when you’re not in college, you’re not working at a job, and you have a difficult time hearing and communicating?

Right now, I am not asking for a miracle. I just wish there were more opportunities for people with disabilities to meet people and feel more included.

“Ask me no questions, I will tell you no lies
Careful what you wish for
We’re looking for angels in the darkest of skies
Saying that we wanted more
I feel like I’m falling, but I’m trying to fly
Where does all the good go?
We’re looking for answers in the highest of highs
But will we ever, ever know?

And I need you to know I’m not asking for a miracle
But if love is enough, could you let it show?
If you feel it could you let me know?
(Oh, oh) if you feel it could you let me know?
(Oh, oh) I’m not asking for a miracle

Ask for forever when the end is in sight
Showing what you want to
We’re looking for light inside an ocean of night
But will we ever see it through?”

Songwriters: Lauren Mayberry / Martin Clifford Doherty / Iain Andrew Cook / Steve Mac

Miracle lyrics © Universal Music Publishing Group

20

I turned 20 years old this week. A couple years ago, I thought that after high school, I would go to college. Get my Associate’s or Bachelor’s degree. And then get a job as a writer or journalist. Here’s the thing, I’ve started taking some college classes. Two worked out pretty well – got A’s. I also tried to take an online class which didn’t work out as well and I ended up dropping. The amount of writing required for that online course would have taken me countless hours to keep up with. What would have taken many students a couple hours a day, probably would have meant 40-50 hours a week for me – for just one class.

I am now grappling with a dilemma. Do I go to college? Or do I look at other online courses like through Coursera or EdX to keep learning even though it wouldn’t be working towards a college degree? Or do I find a job or volunteer work to start getting work experience? This past 2 years, I’ve had fantastic opportunities as a public speaker. Would people want me as a public speaker, if I’m not also a college student? Was that part of my story that people were interested in?

My family and I are struggling with what are the options for me with what I love to do and what I’m able to do – because honestly it’s difficult for me to communicate quickly and often times people don’t take the time to wait for me to say what I want to say – so where are those opportunities to work or participate in my community like I’d like to when it’s this difficult to communicate? What does a job for me look like where I can interact with others to do the things I love to do? How do I work towards independence if I’m hanging out at home every day? Because, that’s what I’ve been doing lately, and it’s not working.

I really love public speaking about inclusion and accessibility. I love advocating for disability rights. I love writing even though it takes me a long time. I love to share my voice with the world. I love my volunteer work as a mentor to an elementary student who has cerebral palsy and is learning to use a communication device and power chair.

We know some of the next steps. I need to get connected with Vocation Rehab Services to find out what they can offer. I need to reach out to different advocacy organizations to see if there might be volunteer work or internships that might work for me. I need to meet with my social worker to make sure the supports I need are in place so that I can keep working towards my goals.

So, I’m 20 years old. I feel confused, floundering, like I’m trying to get to the top of a long flight of stairs in my wheelchair – not sure what’s at the top of the stairs or how to get there.