- Arthrogryposis
- Interviews
Aiko's interview
How did all start?
I was born with club feet, dislocated hips, along with a few other conditions. Though i did not start looking for others with my condition until college.
Do you already have a diagnosis? How long did it take you to get it?
I got my diagnosis pretty much from birth
For what medical specialties have you been treated? What has been the most useful specialty for your?
mostly just general chronic pain and the first 18 or so years of my life, I wore AFO's to prevent my feet from reverting back to how they were at birth. The most useful thing I've found is that cannabis infused lotion is amazing for pain relief without the high feeling.
What has been the most useful thing for you so far?
Learning my limits of how much i can push myself before I need a break. Learning my limitations has helped to prevent worse than normal pain the next day and has helped me to take less time to recover.
What have been your biggest difficulties?
A) asking for help when i need it,
B) dealing with internalized ableism. I try not to let it get to me, but i'm slowly trying to unlearn negative behaviors and thoughts that I have been taught my entire life.
C) Learning when/how to know when I can't do something. I've learned that "you can do anything you put your mind to" isn't always correct.
How has your social and family environment reacted? Have your social or family relationships changed?
My family has always been very supportive, my friends have too. I know i always have a place to vent and talk without fear of judgement. My friends and family are always willing to stick up for me too
What things have you stopped doing?
Being negative about my condition and abilities.
What do you think about the future?
Nervous, but also very excited. I hope to finally meet another person with Arthrogryposis someday.
So far, which years have been the best years in your life? What have you done during them?
Honestly, my current college experience has been amazing. Though i have dealt with ableism most days, the support I have now is the most heartwarming thing ever.
What would you like to do if you didn’t have your condition?
Well, I want to be a dancer, regardless of my condition. It would just be easier to do so without my condition.
If you had to describe your life in a sentence, what would it be?
Cripple punk will never die.
Finally, what advice would you give to a person in a similar situation?
Know how far you can reasonably push yourself, and don't be afraid to admit you are not able to do something. It's hard, but in the long run it's given me a bit of liberation.
