What is it like to live with a disability?

Catalina talks about her journey to accept being disabled and eventually embracing that part of her identity.

Transcript

I became disabled before I even knew I was disabled I've been disabled since I was 15 years old, but I have only identified as disabled since 2017.  At 15 years old, my femur broke and dance class as I'm sure you're known as I'm sure you know, the femur is the largest bone in the human body, it is very difficult to break.  My bone broke due to a very large malignant tumor called Ewing sarcoma That was my first step into disability pun very much intended. What came next was years of chemotherapy surgeries and physical therapy after I fought the ewings I was diagnosed with a different cancer.  The second time it was acute myeloid leukemia or AML for short, the only way I could treat that was with a bone marrow transplant.  Through all of my treatment I dealt with crutches, walkers shower chairs and wheelchairs. I relied so heavily on my mobility aids, but I never claimed them as mine.  They were always seen as a tool that I kept hidden as much as possible, because these tools were temporary and not part of who I was.  I would pose for pictures, without them, if I was seated somewhere at home, we always move them out of our line of sight.  We even kept them in the wheelchair in the garage because my mom and probably everyone else would shudder at the side of it.  As my healing was not linear, sometimes I would get better and we would get rid of these aids thinking that if they weren't there I wouldn't ever need them again naturally we ended up replacing them multiple times.  It felt like after every surgery, we had to do the mobility aids scramble. Where can we find a Walker? Someone in the neighborhood surely has crutches laying around, do you really think you'll need a wheelchair, this time? I wonder if Goodwill might have a shower chair.  It was one of my least favorite parts of being discharged from the hospital.  I always saw my disability, as my current temporary injury or surgery, I was healing from accepting that being disabled might be something permanent was simply outrageous.  I spent years in physical therapy trying to build muscle back that had been removed from my body a long time ago, surely, even if 60% of the muscles and my quads were removed all I needed to do to build it back was workout hard enough.  To this day, I still get the disapproving nudge from loved ones that if I just tried harder, dieted more or worked out every day, then one day I could walk again.  But what if I don't need to walk again to be worthy of a fulfilling life?  I hadn't asked myself that question until I had a very difficult conversation with my surgeon.  I had called him very upset one day after another grueling physical therapy appointment, where I had made no progress, I begged him to help me with another surgery. I pleaded with him that I would do anything to go back to normal, I still thought being normal meant being abled.  My surgeon is my hero, he has handcrafted and puzzled together what seems like 80% of my skeleton.  He said that he would try to do anything that would make life easier for me, but that he did not advise another operation.  I had already suffered the consequences of various infections in my bone from surgery, and he insisted that the risk of losing my leg was far too high, and definitely not worth it.  This conversation broke my heart. This conversation was the end of life, as I knew it.  This conversation also set me free.  My doctor, without knowing it had cut me free from myself by telling me that there was nothing more to do, he helped me let go.  It finally all clicks for me that I was the only one holding myself back from living a full life.  These wildly unattainable expectations that I had set for myself were no longer weighing me down, I had to have that conversation, so that I could move forward and use the tools that I had been hiding for so long.  I no longer forced myself to use crutches and walkers. I have embraced my life in my wheelchair.  My wheelchair gives me access to the world, my wheelchair is an extension of my body and it carries me through this life that I'm still learning how to live.  My wheelchair gives me the freedom that I never knew I would have again so many people think that wheelchair users are wheelchair bound and that we are confined when really without our chairs, we would be bound and confined to our homes.  Granted, the world was not created for wheelchair users, society continues to leave us behind. People with disabilities are, quite frankly, an afterthought, spaces are always designed for able bodies first and disable bodies last if at all.  I cannot tell you how many times I've tried to go somewhere new, only to find out that accessible only means we have a tiny elevator.  Businesses will say oh yes we're totally accessible when I call ahead, only to find out that there's a step at the entrance, the doorways are too narrow and I can't close the bathroom door if I need to use it.  Even with the ADA that was passed in 1990 there are so many loopholes that leave people like me without access.  For an individual in 2020 you need to be making less than $794 of countable income per month and have less than $2,000 in assets to qualify for social security disability income.  I don't think people understand how little that amount is and how much it actually costs to survive in this society.  This also means that disabled people risk losing their benefits if they get married, the government will count their spouses income as their own, and will be left with no assistance. I want to be able to marry my partner.  Unless you are close to disability, you will never have to think about it.  I cannot even tell you how many times I've entered into new friendship relationship or acquaintance where they tell me how often they think about accessibility, now that I'm in their lives what's wild to think about is that disability is pretty much inevitable for everyone's lifetime.  As life expectancy rises so will disability, you will live longer, and with that comes the need for mobility, AIDS, healthcare and access to places disability is the only minority that you can fall into at any moment.  I understand, not caring about an issue that doesn't involve you that's a really popular way of thinking these days, but we should all care about creating a world that we can all access because one day it could be you.