Å·±¦ÓéÀÖ

Do you have a personal connection to the word disability? Tell us about it.
Furthermore let’s think at a deeper level: How can you be an ally to your friends, family members, and or perfect strangers who are part of the disability community? If you are someone with a disability, how can you bring more awareness to your entire community?

i myself am disabled!

i have hEDS, POTS, MCAS, and CIPO, a handful of chronic illnesses that have disabled me as i’ve gotten older. i now use a cane and a wheelchair, have a feeding tube and central line, and am looking into getting a service dog.

i’ve had a rough time acclimating to and identifying with the word disabled, mostly because i lived my childhood relatively healthy and never thought i’d be in this situation. but now it’s something i’m as comfortable with as my being a lesbian (which i’m very comfortable with:)). i’m not “proud� of being disabled per-say, as it does suck sometimes and has caused me a lot of physical and emotional pain and trauma. but being disabled is also what introduced me to my best friend, what taught me resilience and maturity, what made my skin as thick as it is today. it’s taught me more about myself and this world than any classroom ever could.

as for what able-bodied allies can do to help, listen to our experiences. the struggles of disabled peoples are largely just ignored by society, and that’s not okay. advocate with and for us. believe us when we say we’re struggling. and for the love of god, don’t block the disabled parking places.

my favorite books about disability are “nothing about us without us� by james charlton, “sick kids in love� by hannah moscowitz, and “crippled� by frances ryan.

Hi Clary, first off thank you so much for sharing your story with me. I think it’s very normal to take time in adapting to your new world, I know it did for me as well. I admire you so much on how you look at the negatives, acknowledge them for what they are but then find the honest to good things that have come from them. Resilience describes you perfectly in my opinion, and I couldn’t agree more, we disabled people have to grow some thick skin to deal with the ins and outs of the disability world but at the end of the day it makes us stronger and more determined humans for it. You made excellent points on how our allies can help us! My favorite was how our allies can listen to our experiences, they should let us speak our truth and not try to be a hero for us as we can be our own heroes.

You and I seem to share some things in common as I myself use a cane with an AFO brace on my right leg as well as being a wheelchair user. A little bit about me: I was diagnosed with a Glioma brain tumor at the age of 29 (I’m 34 now), during the brain tumor resection, I suffered a massive stroke that left me mostly paralyzed, with a lot of OT/PT therapy and speech therapy I was able to learn to speak again and gain all movement back on the left side of my body. I am Hemiplegic with peripheral vision loss, gait abnormality, long term/short term memory loss just to name a few. I just celebrated my five year “Strokeaversary� earlier this month. I think it’s important that we all celebrate our goals, no matter how small the goal may be to others, to me a goal is always a big accomplishment. So Clary today I celebrate you and all of your accomplishments, thank you for being such an inspiration. Lastly, I just received my service dog Kate back in October 2020 through Canine Companions for Independence (CCI) and highly recommend them as they train these amazing service dogs free of charge for people with disabilities.

My older sister, Kelly, was born with developmental and physical disabilities.

As the younger child the story has been one that I didn't learn completely for some time. But essentially my sister came a month early and my mother's normal OBY-GN was not available. The doctor who was present for the birth claimed that my mother failed during labor and caused all of my sister's medical and mental issues.

For years my mother feared having another child because she was told that she caused my sister to be strangled at birth, caused her brain to be malformed and destroyed her larynx which ruined her vocal cords and left her mute.

We only found out after I was born some years later that the doctor was being sued by multiple other families for malpractice. It was during this time that my parents found out that the doctor had a history of drug use and was not sober for the years during when my sister was born, He later confessed to multiple accounts in which his use of surgical implements or force damaged more than one child.

So when I think of Disability Justice I tend to focus more on the people who have wronged individuals more than what Tristen mentioned in another topic regarding social or medical accessibility.

Kelly is aware enough that she knows that this wasn't supposed to happen to her but I do not know if she has been able to work through that pain. (Because of her label of being in the MRDD program, the State tried to keep her at a 1st grade level, but she literally pushed and ended up finishing with her 5th grade diploma) Growing up was extremely hard for her when she saw her younger siblings surpass some of her achievements to the point where without the ability to communicate she would utilize one of the only things she could control and physically harm herself in order to catch our attentions or show that she was angry.

Kelly has grown up and is now in one of the most amazing mental and development disability programs in our state. She is living with other members of her community in a 5 person home which has around the clock care. Being in HER house with HER friends and chosen family I know has helped a lot.

COVID has not helped though. She has not been able to go to work and has been stuck at her home. It's driving her a bit bonkers, especially cause it's winter here and she cannot get outside.

Pam thank you so much for sharing your family’s story. Your sister Kelly is such a phenomenal woman and I’m sure she has surpassed challenges that no one thought she could. She has a wonderful family who are her “biggest cheerleaders.� Covid has definitely taken a toll on everyone but especially people with disabilities as we know that for the most part we are all considered high risk. If you can, try to FaceTime her, or send her stuff that she likes (example: games, a blanket, something that you know she likes and will make her smile). Also maybe reach out to the people that work where your sister lives, is their specific activities that they do with the residents...etc. Hopefully they are able to get outside and get fresh air as that also can help to see diferente scenery around where one lives.

I had a student during my final teaching internship that was disabled and doctors/teachers said that she wouldn’t graduate with her high school diploma yet she was going above and beyond in her studies with disabilities and all. Her wonderful parents who pushed her as they new she was capable of so much more told me that they had to be her biggest cheerleaders so that she could continue moving forward. She should be in high school at this time and I’d like to think she will get to graduate with her high school diploma and continue doing great things. Again thank you for sharing your story with me.

Pam wrote: "My older sister, Kelly, was born with developmental and physical disabilities.

As the younger child the story has been one that I didn't learn completely for some time. But essentially my sister ..."

Pam, first, thank you for sharing your story. I can feel your family's love for your sister. I'm also sorry that your sister's injury, and subsequent disability, was due to malpractice.

I wanted to clarify something about the social vs. medical models of disability that I explained in the "Accessibility" thread. They are not designed to be all-encompassing ways to think about disability justice. They are help build a world that is the most accessible to the most people. In your sister's case, the social model of disability would look at her environment after her injury at birth and try to find the most accessible way for her to go to school and work and live. And it sounds like your family has done a good job of that and she is living in a place she is comfortable. That model also doesn't in any way exclude a person from choosing to address, prevent, or cure (if possible) that disability. It just leaves that choice up to the individual, not society. It is about accessibility, not all disability justice issues.

I wish there were no irresponsible doctors and holding doctors to account is absolutely a part of disability justice. We should never stop fighting for safe healthcare.

I had a college professor who was disabled. She was sight impaired, but not blind and possibly some other items, too. I had taken AP English courses for all of my high school curriculum and went to school knowing that I was a good writer.

She taught me the error of my ways VERY QUICKLY!

Reading this book has made me appreciate how much she worked. Especially the essay, "Why My Novel is Dedicated to My Disabled Friend Maddy" Often times I would walk past her in the library pushing our papers almost up against her face. I hope she found help with someone like Maddy, too.

This book was a very eye-opening experience to others with various disabilities.

I myself have chronic Achilles tendonitis and my mother has Bipolar Depression, so I'm no stranger to what "different" is like. I manage day-to-day activities by using properly supported shoes, sometimes with ankle braces depending on what I'll be doing. It doesn't affect me too much (could just be I learned to get used to it after a decade), but if you were to ask me to go on a several-mile hike, I'd politely decline. I know my mother takes medication and struggles with getting through the day wearing a normal demeanor, and I wish she didn't because I know it takes a toll on her.

I'm glad I spent the time reading this.

Hi Annie,
Thank you so much for sharing with us on the great professor you had. I know I’m probably being a bit bias as I myself was a teacher but I have always believed that teachers open so many doors to our beautiful minds. I’m sure you learned many valuable lessons with your professor. The essay you spoke about is one of my favorites as well. I enjoyed the book so much that I have now read it twice!

Hi Kyle,
I absolutely agree with you, the book has definitely opened my eyes more as well and this is why I believe it’s important that we all continue to educate ourselves on the variety of disabilities that are in our world. I think it’s great that you know when to say no to an activity that may make you overly tired and you speak openly about not wanting to do the activity. Bravo to you! I myself am one of those that would say yes and then would come to realize too late that I should’ve just said no to certain activities. I am so happy that you enjoyed the book!

Pam wrote: "My older sister, Kelly, was born with developmental and physical disabilities.

As the younger child the story has been one that I didn't learn completely for some time. But essentially my sister ..."

Pam, sorry I misread that the first time for some reason as not thinking of the social model accessibility of disability as disability justice at all rather than the first thing that comes to mind (which I think is actually what you meant). I didn't mean to tell you how to feel, only to illustrate that you and your family were actually already doing this without consciously thinking about it or putting a name to it.

My story of disability has been very complicated, but the short version is this... I had everything planned out: at 23 years old, I was going to graduate with my Master's degree, publish my research, and have a baby in that order. Then I got very sick with HELLP, eclampsia, stroke, and full placental abruption when I was almost 7 months pregnant and two weeks away from presenting my Master's degree (I did go back and finish my Master's when he was just about to leave the hospital as well as publish work later). My son and I both very nearly died, and he was born at 1.4 lbs. It turned out that my immune system went haywire. I have lupus, APS, hyperadrenegic POTS, neuropathy, and several other rare neurologic and autoimmune conditions. It continues to progress over time, and I use equipment like a wheelchair and a BiPAP.

My son has lung disease from being on a ventilator for months, but it is not quite as life-threatening as it once was, after years of emergencies where he was not breathing from the common cold over and over. The other main issue my son has struggled with is autism and OCD, for which the help is woefully inadequate.

I think personally that what constrains me most is not my wheelchair or being in pain or any other part of my disability, it is the systems built around disability. My combined hospital bill when I had my son (my delivery and my son's NICU stay) was a little over $1.5 million before insurance. My care and my son's care cost millions a year without ever going to the ER (before insurance). So that means that I must do everything I can to have health insurance. We ended up homeless at one point, because our choice was between health insurance or housing. After several months, we had to choose housing and drop my health insurance. Many disabled people are forced to choose one thing- housing, insurance, income. It shouldn't be this way and it doesn't have to be. I think most people assume they won't be disabled until they're old, but just in case there must be a system that takes care of everyone. It's just not true. And it could be anyone at anytime, even a young woman starting a family, healthy enough to use a midwife. That system just is not adequate, especially if you have no other safety net.