31 Days Of Disability Pride 2023 Q&A

It’s the end of Disability Pride month and with that comes a little Q & A that was created as part of 31 Days of Disability Pride, A collaboration between @obviously_oakley, @invincible.kat,and @ra.tej.touille on Instagram. Without further delay let’s get started!

1. Introduce yourself! Include as much or as little as you are comfortable sharing!
Hello everyone, I’m Max and I’m the person who runs Disability Diaries, a blog dedicated to exploring disability and mental health through personal experience and creative writing. I am currently a junior in college with a major in history (concentration: ancient and medieval history) with a double minor in studio art, and medieval & renaissance studies. In my spare time I run a small business creating fantasy and gaming themed art that can be found at https://Etsy.com/shop/thedisc0panda and can usually be found reading, writing, or playing tabletop games or video games.

2. How were you introduced to the disability community?
I am a former micropreemie born at 27 weeks but the size of 24 and experienced complications during my time in the NICU, as a result my introduction to the disability community was very early and some of my first early childhood memories are interacting with my EI and medical providers. As I got older, developed more chronic illnesses, and met others like myself I became involved in the community more.

3. What's your favorite thing about being disabled/part of this community?
How welcoming the community is to different kinds of people and willing to help no matter if it’s assistive device recommendations or names of providers to see. It has been incredibly helpful personally when finding assistive devices that can help in a school environment.

4. How do you focus on self care amidst it all?
I find ways to relax and keep stress under control as best I can as it can exacerbate certain conditions. Usually that involves listening to or playing music, creating art, playing a game, reading or writing, and spending time with friends.

5. What is a gift would you love to receive?
The lord of the rings themed mechanical keyboard (dwarven themed) from Drop.

6. Tell me about your favorite low spoon day activity?
On the days when I can’t really do much of anything and don’t have the energy to boot up a game I like to watch early episodes of NCIS.

7.What is your favorite (non medical) symptom reliever?
A nice warm (but not too hot) shower and a nap.

8. Favorite accessibility/adaptive tool that makes your life easier?
My Roger FM system that connects to my hearing aid, my phone, and via a connecting cable anything else with an audio port.

9.Favorite place to get disability related (non medical) gear?
https://fuzziesartdesigns.co.uk/ has some great hoodies like the symptom hoodie!

10. Introduce your adaptive equipment/medical devices or your pets! If this does
not apply to you, share a photo that brings you joy and tell us about it!
Currently I use a Phonak Sky B-P model hearing aid in purple with a boot and Roger X attached to it, a Roger focus 2 in silver, and a Roger pen in navy blue along with prescription eyeglasses and a special alarm clock that goes up to 110 dB.
 
11. Who's your biggest cheerleader/support system?
My friends are great when it comes to support, checking in, occasionally calling for help in the middle of the night, and making fun of my very strange yet somehow still mostly functioning body with me.

12. What is your favorite inspirational quote that gets you through the tough days?
“Never, never, never give up.” -Winston Churchill

13. What does a day of joy look like for you?
Getting to sleep in but still having enough time in the day to do things like go out for a walk and see friends, do things I enjoy, eat good food, and get a good night's sleep.

14. How do you prefer to recharge your mind and body when you find yourself
struggling?
Sleep, if needed, reach out for help, and make sure I am eating and drinking adequately.

15.How has your perspective on Chronic Illness/Disability changed since being
diagnosed?
In some ways I’ve learned to cope better, but sometimes I have times where I stop and go oh wow I was not dealing with this as well as I thought, in which I then reach out to support. I’ve come to accept my situation for the most part, and now it baffles me that not everyone has 14 appointments when they go home for a week during spring break.
 
16.Your favorite way to cope during a flare?
Curl into a ball with blankets, put on a comfort piece of media, and drink lots of warm water.

17. What is your go to way of maintaining health related boundaries with nosy
strangers?
Refuse to answer questions in the most polite way I can or simply not bring it up in the first place.

18. Share a picture with one (or more) of your disabled besties!
I unfortunately don’t have pictures :(

19. How can people best support you?
Interact with my work, support my shop/Patreon/kofi as it helps pay the bills, and give me a bit of extra time to do things or catch up with you- I have little legs I’m going as fast as I can!
20. What does being disabled mean to you?
Not being able bodied or neurotypical.

21. Which diagnosis/disability do you want to learn more about?
Indolent Systemic Mastocytosis, my most recent diagnosis that is rather poorly researched even compared to other mast cell diseases.

22. Where is the most accessible place you've visited?
The Chicago children's museum…though I wished they allowed or had a section for older kids and young adults, we need accessible play spaces too.

23.Advice for the newly diagnosed.
Do your research, reach out to your support system, and find things that help you understand, adapt, and cope.

24. Advice for the medical field.
Listen to patients when they tell you something is wrong or they are in pain. Not all of us show pain in obvious ways, or are used to being in an elevated state of pain and thus are able to function in that state but it doesn’t mean it isn’t there. Listen, be compassionate, and try your best to help rather than saying I don’t know and leaving it at that. Use your resources.

25. What do you love most about yourself?
I’m creative and resilient.

26.MYTHBUSTERS: What is a common myth about your disability? Help spread the
truth about it!!
Everyone with cancer has a cure and/or loses their hair. My treatment plan involves medications where I keep my hair but my disease has no cure and limited options should I progress to later stages.

27. Do you have a disabled person you look up to?
My former high school TA who I still am friends with to this day.

28. What hobbies or activities bring you joy or peace?
Playing games, writing stories, discussing things related to those stories or games and all the silly things that pop into my head with friends, listening to music, playing the drums, watching (fictional) crime shows, rambling about history, going for walks on sunny days, and reading my seemingly never ending pile of books.

29. What is a goal of yours (could be health related or not)?
Get into grad school and eventually find a job that is accessible and won’t burn me out.

30.If you had a magic wand, what one symptom would you get rid of forever?
Lack of sense of taste and smell, it makes eating rather unpleasant and boring.

31. What are some ways you advocate for yourself (or others), even when it's tough?
I am very good at writing letters and when I can’t verbalize the words I’m trying to say to professors, medical staff, or anyone else I will write them a message, a letter or an email. So far it’s worked remarkably well.

If you’ve read this far thank you for reading and I hope you enjoyed it and you’ll stick around, I’d love to have you as part of this little community!

Until next time,
Max