Now You See Me: Recognizing Invisible and Dynamic Disabilities | Elizabeth Caldwell | TEDxClemsonU transcript

[Music] [Applause] according to a recent survey Americans own an average of 19 pairs of shoes now depending on who you are that number might sound high or low but I'm going to assume most people here have the privilege of owning at least more than one pair now why is this put Simply Life demands different things from us and we often tailor our shoes to be comfortable and confident in those diverse settings you wouldn't wear high heels to run a marathon flip-flops to walk on ice or bunny slippers to give a TED talk when I walked on stage what was the first thing you noticed it could have been my outfit hairstyle maybe the outrageous bunny slippers but most often my can is the first thing people notice about me and one stranger see me with a cane they immediately begin making assumptions the two most common are one I have a cool injury that I am just dying to tell strangers about or two I have a devastating disability which would then just be uncomfortable to talk about so very few people ask so why do I use a cane well standing here today is difficult because I'm experiencing pain throughout my body you cannot see this but you may have been able to guess due to the mobility Aid because of this pain I'm wearing comfortable shoes and using a cane that allows me to participate in this event however if I wanted to better match my my shoes to the occasion with something like say heels I will also better match my Mobility Aid to the situation this is much better this is me I think now is time to address the elephant in the room I have a dynamic physical disability that used to be and can still be at times invisible before I begin I just wanted to take a moment and Define what these words actually mean a dynamic disability is a health condition that can fluctuate in severity and change someone's needs and abilities depending on the day or activity much like someone's shoe Choice an invisible disability is exactly what it sounds like a condition that is not immediately apparent but disabling the nonetheless when most people Envision someone with a disability they probably picture someone in a wheelchair who has no lower limb movement however only 10% of people with disabilities are wheelchair users and it is estimated that over onethird of this population has at least some capacity to walk without one these people are classified as ambulatory wheelchair users and I fall into this category I believe it it's time to innovate the way that we think about disabilities so that we can Elevate the entire disab ility community and make the world more accessible for all but where did my advocacy Journey begin 7 years ago these topics and statistics were the last thing on my mind I was playing three Sports at once and I was a normal active teenage girl okay maybe I wasn't athletically gifted but I was able to give it my best shot at the time my impression of disabilities was that they either affected you since birth or you had to have a major life circumstance that changed everything in instant so when I was 14 and slowly began experiencing chronic pain then excessive fatigue and Joint dislocations among other symptoms my mind did not jump to disability because on the outside I was a normal healthy appearing girl in hindsight my disability is genetic which means I have technically had it all my life but patients typically don't begin experiencing symptoms until adolescence this meant I fa barriers to accessing the healthare and diagnosis I needed but also stigma from peers most people my age had the same misconceptions that I had before I was diagnosed so when my doctor prescribed different AIDS and braces that would rotate on different joints throughout the school year it was assumed I was doing it for attention or to Simply get out of gym how could I need an aid one day and not the other well why do you change your shoes depending on the weather or where you're going the only difference is I have to use different aids to be able to participate in certain settings but why should you care about any of this well one in four American adults have some type of disability one in four that makes disability the largest minority in the world and one of the only minorities that you can join at any time that means it is extremely likely that almost everyone in this room either has a disability or knows someone who's affected by one now if you're sitting there and thinking I'm not like that or I don't know anyone who's like that I encourage you to remember what I said earlier not all disabilities are visible would you have been able to guess that I'm disabled if I came on stage without my cane probably not I know this because my disability only became visible when I became a full-time cane user after my first year of college now simply being aware that invisible and dynamic disabilities exist is a huge step to making the world more inclusive but there are countless other ways that we can innovate our mindset to be more accessible however I was told that I only have 10 minutes so here are three good starting points first despite it stigmatization disability is not a bad word I'm proud of being disabled because it's a part of who I am it shaped my interests fuel my passion for research advocacy and healthare and allow me to meet amazing people throughout my journey disability is an identity and when people outside of the community view it as a taboo topic that needs to be sugarcoated with phrases like differently abled handycapable or unique abilities it prevents vital dialogue that could truly improve the lives of people with disabilities when society believes that an identity that affects 1/4 of the population cannot be talked about directly it leads to social avoidance and stereotyping that ultimately lead to policies that are not maximally accessible just think change can happen with a simple shift in mindset I've experienced what it is like to have both a visible and invisible disability and I realized the most disabling thing about my condition is not my health at all when it was invisible biggest obstacle was not receiving accommodations or understanding from people who refus to accept my disability status now with my disability being visible I'm faced with discrimination as people automatically doubt my Independence or my ability to be normal but most of all the most disabling aspect throughout this entire 7-year process is that Society resists inclusive change Judy human who was regarded as the mother the disability rights movement once said disability only becomes a tragedy when Society fails to provide the things we need to live our lives job opportunities barrier free buildings it is not a tragedy to me that I'm living in a wheelchair this brings me to my second point we must treat the Americans with Disabilities Act as the floor not the ceiling of expectations set for society to be inclusive most people don't know what the Ada covers unless it affects them but simply the overall goal of this docum is to prohibit discrimination against people with all types of disabilities in areas such as education employment transportation and more however this document simply existing does not automatically mean that our country is accessible I encourage you to leave today and look at the world through the lens of someone with a disability and begin identifying barriers most places are ADA Compliant however that does not mean that they're Equitable and sometimes it even means that they are inaccessible let's take this room for example if I needed to have a class in this room and I needed to use my wheelchair where could I sit well if I wanted to use a desk I would have no choice but to sit in the very back row now what if I had a disability that also affected my hearing or Vision I've been in rooms exactly like this where Professor specifically asked students to only sit in the first three rows what would I do then accommodations are sometimes in place to help make up for these gaps but this is where the social perception of disability can diminish the Ada's impact a study found that nearly half of students with disabilities do not register with their institution's Disability Services office this choice is linked to feelings of anxiety through the fear of being turned away not believed or being labeled not to mention some accommodations are just difficult to maintain I have an accommodation where I'm allowed to arrive late to class due to my Mobility impairment however when my disability was invisible and I was only a few minutes late to class the professor embarrassed me and called me out in front of the entire lecture hall because they had no way of remembering that I was the specific student who had those accommodations in our large class this brings me to my third and final point one that I think perfectly encapsulates this talk walk a mile in my shoes now I don't necessarily mean my specific bunny slippers although they are extremely comfortable and I do highly recommend everyone get a pair but I hope to encourage each of you to approach each day with compassion and patience for others experiences because that small Choice can help change someone's day and life for the better I don't want to be seen as attention seeking for using Mobility Aid I just want to be able to participate in life with minimal pain I don't want to be seen as a liar or even a miracle in progress for being able to stand up and walk away from my wheelchair I just want people to know that invisible and dynamic disabilities exist but most of all I don't want to be called an inspiration for just being disabled any more than I want to be called a hero for wearing my slippers on stage I just want to be remembered for what I have done not what I have done despite my disability I will now leave you with this final phrase that I hope you'll reflect on and eventually live by treat us like we can and watch us show you that we will thank you