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Leann Springer

Including Student Athletes With and Without Disabilities in High School Sports

“When kindness and inclusion of disabled kids is seen as applause-worthy, it shows how society really feels about disabled people.” – Disabled Feminist via Facebook This weekend, I saw these words shared atop a post of a blog from a mother of a child with a disability. The child had just been invited to her first-ever birthday party. “Fitting,” I thought. The day before, I was at a track meet for my nearly-18-year-old twins, and there was a “unified” 100-meter race. Typical “unified” sports teams consist of athletes both with and without disabilities, but my experience is that few athletes without disabilities join these “unified” groups. The word “unified” is often just a sloppy stab at allowing people with disabilities into non-disabled spaces and activities. Last time I checked, though, public schools are for all kids, and this type of event is just another type of segregation that gives children with disabilities the message “You don’t belong.” Our team was hosting the meet, and it was also Senior Recognition Day. We stood at the 40-yard line — my two sons, my husband, and I — along with about 20 other seniors and their parents who would be announced as soon as the “unified” race ended. They lined up the “unified” athletes. Their names and schools were broadcast over the sound system, and the crowd ate all of it up — as if somehow these kids had just been elevated to celebrity status simply for being in a race for a few brief moments. Some of the seniors who stood in line with us began to move forward to the edge of the field to cheer the athletes on — then more arrived. I was afraid to look down the line to see only my kids remained back. I looked at one of my boys, and he said, “I don’t know how I feel about this.” Mom taught her boys how to identify ableism well! I stood there thinking that people in the stands would see us as the only people who weren’t cheering for these kids. But I felt that feeling you get in the pit of your stomach when you know something is wrong, so I just couldn’t cheer. The “unified” race ended. I turned and looked at my husband. “I think I know what I’m going to write about next,” I told him. “You should. You absolutely should,” he replied. “Let’s see what their times are. I bet they’re not that far off from some of the ‘non-unified’ 100-meter heats. There’s no reason why they can’t run in those.” I decided to look at the “unified” team’s results when they were posted. I thought it would be interesting to see if their times were faster than some of the kids in the “non-unified” races. But I never found out because they didn’t post the times for the athletes who ran in the “unified” 100-meter race. They weren’t even listed as competitors on the Mile Split website. I wondered if they even timed the “unified” runners? Yes, these athletes participated in a track meet, but that in and of itself is not commendable. Instead, these athletes participated in an event in which organizers created a separate “special” event — an “island in the mainstream” if you will. This event was segregation presented as a public display that we were all supposed to be happy about. The underlying message is a telling testament to the beliefs that are largely held by the masses: We’re uncomfortable with differences. If you’re “different,” then you belong in a different place than everyone else. The Education for Handicapped Children’s Act — which was signed into law in 1975 and later renamed the Individuals With Disabilities Education Act (IDEA) — has created a body of evidence that shows that with inclusive education there are better outcomes for kids both with and without disabilities. School athletic teams are extensions of school and classroom communities. They provide opportunities to learn and grow and prepare youth for life beyond their school years. What are we teaching student athletes when we create separate spaces for athletes with disabilities? How can student athletes with all abilities enrich fellow athletes’ experiences? What would really be commendable is for the organizers of this “unified” race and others like it to see that there is nothing wrong with bringing kids with disabilities onto the team just like all of the other athletes on the “non-unified” team. At every track meet I’ve witnessed, there are athletes of varying abilities, body physiques, and agility levels. Some athletes aren’t on the path toward college athletic careers. Some students join sports to stay active, to be a part of a team, to have more social interaction, or to belong. At track meets, there are many opportunities for a variety of athletes to participate — not just the top performers. If given the opportunity for true inclusion on the track field, some of the “unified” athletes might show that they are just as competitive and talented as athletes without disabilities. Of course, just like some of the athletes without disabilities, some might not. However, if this were to happen, all kids might create connections and friendships with each other. All kids might have the opportunity to find a space where they truly belong. When we no longer have “unified” races, that’s when I’ll stand up and cheer. When I look at a group of athletes on the starting line and witness the true diversity that makes up our schools — athletes with visible and invisible disabilities and athletes without disabilities competing together — I’ll applaud like the spectators at my sons’ race did. Let’s stop creating segregated events for people with disabilities and instead build spaces where we all belong. We know better, so let’s do better.

Stop Infantilizing Disabled People

This article is for people who mean well, but often do not know what to say or whether or not they are saying offensive things to disabled people. Recently I went to a bar with some friends who aren’t disabled and at the end of the night a woman came up to me, grabbed my arm, and told me that I was “so adorable.” Able-bodied people may not immediately see anything wrong with this “compliment” in this scenario, but at a bar as a woman in a wheelchair, being called “so adorable” is not the “compliment” you may think it is. It is actually viewed as infantilization, which is when an adult is treated like a child. As disabled young adults, we already face an uphill battle to be taken seriously in entering careers and dating spheres, etc., and these comments and actions reinforce our fears. This has happened to me more often than I would like to admit. Despite my two nose piercings and three tattoos, people, primarily feminine-presenting, infantilize me. I was at a department store after a difficult day, my wallet, car keys, cell phone, and tattoos all on display (I am very clearly an adult), but an older feminine presenting person came up to me and said, “Aww, you’re so sweet, where’s your mom?” I remember them reaching out with their hand like they wanted to touch me. I made space between us for two reasons: I did not want them to touch me, and I had so much anger inside of me because I was so tired of not being seen as a human being capable of taking care of myself. I only replied with, “I’m [my age]” and rolled away. This and every other instance of infantilization has ruined each day and resulted in many venting sessions to my friends, family, and therapist. Even in my workplaces, I have had co-workers reach over me, ignore me, and tell me how to use my wheelchair and that I am using it wrong. I think we have a lot of work to do as a society. If you would not say it to someone who is able-bodied in the same situation, don’t say it to a disabled person. If you would not say it to an able-bodied adult, don’t say it to a disabled adult. If you do not know this person, maybe don’t say anything at all. If your “compliment” has the words “someone like you” in it at some point, do not say it. Compliment our outfit maybe, or makeup, or hair. We are not an inspiration for getting out of the house. Lastly, we do not deserve to be treated like children.

Mae

Why We Must Fight for Disability Rights and Inclusion in STEM

One thing that I noticed when I started pursuing further education and a career in STEM (science, technology, engineering, and mathematics) was that I was part of a minority group. I was surrounded by mostly male individuals, though my cohort mates were more diverse in gender (most of the male individuals were older students and faculty). While this wasn’t surprising, it still was hard to digest. I’d always been encouraged to pursue science and surrounded by female friends in my STEM classes. I was expecting to be surrounded by new female scientists when I started in my new lab, so I was surprised when I started on the first day, I was one of two females. Over time, when my lab mentor moved on to a new position, I became the only female in the lab. I didn’t think too much of it and kept to myself. I did have a few individuals to look to as role models in other labs in the department, so it didn’t strike me as out of the ordinary to be the only female in my lab. However, as I kept going forward in my training as a scientist, I could feel like I was different. My mental health suffered while finishing my undergraduate degree and at the beginning of graduate school, and when I turned to classmates to talk about my struggles, I was only faced with silence and treated like an outcast. I kept quiet and this was the first time I can recall feeling as if I did not belong in the field I loved so much. Upon my return to my graduate program after a medical leave of absence, I was at a lunchtime seminar when an older male faculty member saw me and said, “They let you come back?” The department I was in for my graduate work was small enough that all the students and trainees were known to the faculty. This has stuck with me as it created a lot of doubt in my mind about whether or not I belonged in the field. As life happens, I started becoming ill and received a diagnosis of dysautonomia. With this diagnosis, I was paired with my service dog, yet this posed some challenges as a graduate student working in a cell and molecular biology laboratory. The first piece of trouble came when I was barred from working in my lab with my service dog. This came as a surprise as I had notified my professor almost a year prior when I was approved and matched for a service dog. After a nearly two-month fight for my accommodations, my service dog was approved to stay in an office space down the hall from where the lab space is, locked in a crate alone while I did my research. Defeated and questioning where I was going with my career, I left my graduate program and moved into industry while I tried to figure things out for myself. While at my industry position, I was able to have my service dog with me, but again, he was kept in the office space and barred from the lab space altogether. All the time, I had proper protective equipment for my service dog so the argument that it was a safety hazard did not apply. When I had a medical episode at work, my service dog was not brought to me and I was not taken seriously. I was sent to the emergency room, not in an ambulance, but via a car service that I had to pay for myself. The incident was not documented and upon my return the next day, I was told by my supervisor that there was no job for me if I could not do my job as assigned, and to make sure that I didn’t let this happen again. Ultimately, I decided to pursue a career in education, something that had been a passion of mine since a young age. As I started to transition into education, working towards my teaching credential, I found that in my coursework, there was much about pedagogy but little related to accessibility, especially surrounding STEM. I found this to be true as I tried to step into the classroom, being told by various school sites that there was no position for me or denying me entry to the front office simply because I had a service dog. I recall one instance when a mentor called me to drop off my resume at a local school that needed a science teacher. My mentor gave the office staff my name and told them I would come within the hour. When I arrived, I was stopped at the door and told that there was no position for me, despite my name being matched to the one that was given to them by my mentor. While I cannot confirm if the position was filled within that hour or not, I know that people who knew me were enraged. Despite the ADA being in place and providing protections for individuals with disabilities, there is still much work to be done, especially in niche fields like STEM. The experiences I have had in the STEM profession, as a minority and somebody with a disability/invisible illness, drive me to provide some sense of resolution for individuals with disabilities to pursue STEM. I never had role models to look up to who showed that being different is OK, and thus I hope to use my experience and passion for education to break down barriers in STEM. As I work towards my doctorate of education, I hope to create an opportunity for educators and community members where we can all come together to discuss how we can make STEM accessible, increase diversity, and create change in the field.

Joanna Tierno

Problem Types of Thinking That Have Hampered Our Response to COVID-19

It is perhaps human nature to be underprepared for threats that do not occur frequently.  My hope is that we can learn some lessons from the COVID-19 pandemic that we apparently did not learn from pandemics past. Below are some types of thinking that I feel have hampered our response to COVID-19. 1. Political thinking. I can understand why some people are viewing the pandemic through a political lens when from the start, elected officials were making policy decisions about the pandemic.  Most politicians are not experienced in public health, yet the policies they set in place have huge public health implications as well as an effect on all other aspects of our lives.  Confounding the issue is that elected officials need to get voted in, which means they need to appeal to a wide group of voters who are also usually not experienced in the areas of public health, epidemiology, or infectious disease.  So it’s really not surprising that not all policy positions have been winning ones.  However, when we view the pandemic as a political issue only, we lose sight of the fact that it is an actual health issue. 2. Magical thinking. Magical thinking can be great fun for children and adults alike.  Fairies, the Easter bunny, Santa, and Bigfoot are all things that can make us smile.  In real life, behaving as though we have been sprinkled with magical fairy dust and that no harm could ever come to us is simply not helpful. None of us are immortal, and all of us can face health issues.  Some people like to think of sad stories they see on the news as “other” people. People who are somehow different from us, the blessed and protected folks. One of my doctors explained to me that she always knew that she could die, and that bad things could happen even to her. When you internally acknowledge that you are not any more special than everyone else, you can learn from the experiences of others and try to take concrete actions to avoid the same fate they suffered. Simply put, when you face reality, you are more likely to embrace prevention. 3. Religious thinking. Religion and spirituality are a great help to many people.  Unfortunately, religion can also be harmful at times.  Religious wars and cults are examples of religious thinking gone wrong.  Another time it can be harmful is if it leads you to act in reckless or harmful ways because you have faith you will be protected from harm.  I am a believer in God helping those who help themselves.  If we take actions that are more likely to have good outcomes and we have faith, that is a most winning combination.  I also feel that God made some people very smart and very exceptional to help us as a whole.  We have amazing innovations and medical care because of the minority of the human race who are exceptional.  I am glad to benefit from the experts among us, and I don’t think religion has to mean total rejection of science and technology. 4. Ableist thinking. There is a divide between the healthy and the sick.  When you are born healthy and nothing has gone wrong for you healthwise yet, it is hard to picture what it is actually like to be disabled. I was born without a whole immune system.  I have had trouble fighting simple infections, and I have seen patients like me of all ages lose their battles with my disease or live with the consequences of organ damage from infection.  It’s not a far stretch for me to envision dying, being on a ventilator, or having long COVID.  It is a longer stretch for those of you who have not walked in my shoes.  However, just because you were born healthy or are young, that is no guarantee that you are going to stay that way.  Please don’t think of yourself or those around you as being above having chronic illness or disability.  It literally can happen to anyone at any time. 5. Conspiracy thinking. When things go wrong and when people are fearful, some turn to conspiracies.  This provides a way of looking at things that may feel safer and may provide the community support of like-minded conspiracy thinkers.   There is real-life harm that can come from denying reality.  When you are not facing reality, you may make poor choices which can lead to worse outcomes.  When it counts, face reality head-on. 6. Denial. Denial is a popular coping mechanism.  If you deny that something is happening, you don’t have to deal with it.  Unfortunately, denial leads to bad choices, which ultimately may lead to worse outcomes.  Facing reality is often the easier path to take. 7. Of-the-moment thinking. Some people haven’t learned to delay gratification.  When I was little, my mom brought me to a department store and said that she could afford to buy me a black-and-white television that day, or I could put a color television on layaway and I would get it in 12 weeks.  I chose the color television.  I delayed getting what I wanted that day for a better item in the future.  During the pandemic, I have seen people risk their future to have fun today.  It’s good to keep a balance and have some empathy for your future self.  Is a poorly- ventilated gathering today worth dealing with a health issue in your future? The ability to care about both the present and our future is important.  If you plan on maybe being alive in the future, you want to consider your future health in the actions and inactions you are taking right now. What you do today may very well have a direct impact on your future. 8. Selfish thinking. Just because you are super healthy and are sure COVID is no big deal for you, that does not make it true for everyone.  Nearly every person has someone in their life who may be considered at high risk for this virus.  Show some empathy for other people who want to survive and thrive just as much as you do but are facing additional challenges.   The disrespect shown toward many disabled people and people with medical conditions during the pandemic is not a good look, and it does not speak well for the people acting that way. 9. Overconfident thinking. Overconfidence can kill.  People thinking they are immune and thinking they have all the answers have been very detrimental to the cause of preventing illness.  Simply acknowledging the complexities, and knowing that we don’t know it all, that we don’t have everything under control yet is humbling and makes people more likely to take reasonable precautions given our situation. 10. Mistrustful thinking. Not trusting any experts is not healthy.  We need some trust and respect for people to work together and to have a shared reality.  Without a little trust, things fall apart.  The pandemic has highlighted the need for everyone to have a doctor they trust and to have the ability to tell trusted sources of information from less trustworthy ones.  When people don’t know who to turn to, they can fall for anything or end up listening to no one. The above list covers some of the pitfalls I have witnessed during the pandemic.  I am sharing them not to be critical or argue, but in the hopes that we can avoid some of these very human pitfalls in the future and become more resilient.  I think we owe it to everyone who has suffered to try.

Katie Jo Gee

How COVID Vaccine Refusers Make My Life With Disabilities Harder

I’m struggling. Another person’s cold has left me without a voice, constant pressure in my chest, and this means another weekend spent going between laying and sleeping. But I deal. I deal because this is the deck of cards I was given, and you play with the cards you have, not the ones you wish you had. Lately, I have become more and more frustrated with the lack of empathy throughout society. I look at others’ metaphorical hands and they make such light comments about their deck or throw their cards around like they don’t matter. Sometimes I imagine taking literal cards from people that have things like “can procreate” or “mentally healthy” or “can breathe going upstairs” on them, holding them up to their people’s faces and screaming “Why you? Appreciate this!” I have always struggled with this frustration. To combat this, well honestly, this selfishness of mine, my mother and father taught me to use perspective-taking, and to empathize. They worked to help me really understand what matters to another person to work on this frustration. We worked so hard on this that I am able to feel what is just as important in another’s eyes even though the situation may not feel as large as my own. I know I can empathize, and that this quality has helped me greatly work with the population of amazing students I am honored to work with, but I am really struggling with consistently implementing my strategies with adults. I’m struggling with adults that say they are against vaccinations… now, if they are someone who watches everything they consume, I get that! If they watch GMOs, pesticides, and their consumable materials, I totally get that they are truly wanting to wait for more evidence. But I just want to know, how much evidence is enough? How many lives must be ended or negatively impacted before you are willing to put yourself at whatever risks you are worried about? For instance, after you’ve had 10 friends die from COVID, then is it worth attempting the shot? Or does the shot need to be around three years old, and then you’ll take it? I just want to know the deciding factor as someone who doesn’t have the luxury to question those decisions. I’m struggling with adults who are anti-vaccination but then consume alcohol like rye, potatoes, and wheat are going out of business, or join fitness programs where they take powders and supplements that they didn’t research. How can you say you don’t want to inject yourself with a substance because you don’t trust it, but you’ll purchase a brightly colored powder and suck it down because a friend of yours says it helped them drop a couple of pounds or reinvigorated their sex life? I’m struggling with folks who are busy blaming the effects of a broken system rather than making active steps to repair the systems that lead to the effects. These people that are getting to walk away after wielding weapons or being identified as previous abusers and gaining powerful roles, I am having a hard time empathizing with them. Especially when I know the situation would be completely different if one component was changed. These are the people that are cycling in my mind when I begin to think I need to apply for disability. For, you see, many have asked me to sign up for disability throughout the years, but I continued to say the same, “I’m not sick enough yet.” When I was told I couldn’t play aggressive sports and quit basketball and volleyball in middle school (forcing me to attempt music and acting — which was a laugh), I wasn’t sick enough. When I was given more and more restrictions about when to sit out and received eye-rolls and passive-aggressive responses from physical education staff, I wasn’t sick enough. When I was told I may be going onto the transplant list and had girls spread jokes that I couldn’t have sex because of my deformed heart, I wasn’t sick enough. When I was cut open and given a robotic device and people told me or texted others that I was dramatic as I struggled through processing the mortality rates I was researching during late nights, I wasn’t sick enough. When I was shamed by many for getting a tubal ligation because I was afraid of losing my reproductive rights should I ever get pregnant, I wasn’t sick enough. When I was late to our wedding rehearsal because I was pushing myself too hard and forced my organ into several arrhythmias and worsening heart failure, I wasn’t sick enough. When I woke up in surgery and felt them burn my heart so the lower half became paralyzed and dependent on a machine for the rest of my life, and returned to “you don’t look that sick” four days later, I wasn’t sick enough. But now, the world is sick enough, which makes me think I am sick enough because I haven’t felt that before. I’ve never felt that I was boxed in with no other wiggle room to find a place where I could be successful. The abled often do not care for the disabled, until they become them, or are “burdened” by them. They’ll pray for their healing, but won’t get a shot for them. They’ll speak of freedom and proof, but dismiss the truths that are uncomfortable for them with fallacies. Long story short? I officially qualify for disability parking and am looking forward to the snide remarks and side-eyeing because I know I waited until they were sick enough for me to admit I was too. Next stop, more disability decisions, and full-on warrior woman advocate powers!

Carly Fox

Stop Pitting Mental Illness and Physical Disability Against Each Other

“We need to make getting mental illness accommodations as easy as getting physical disability accommodations.” The first time I heard this, I was at a roundtable consultation and was in complete shock. I had never heard this before, and immediately saw it as divisive and negative rhetoric pitting physical disabilities against mental illnesses. The second time I heard this, I was providing strategic advice at a consultation. My face immediately hinted at my disbelief (as it always does) and the facilitator asked me to speak on it – which I did, respectfully and hesitantly. The third time I heard this, I was a participant at the Global Youth Disability Summit. When I shared how this was harmful rhetoric, a non-disabled person tried to tell me that my interpretation, as a disabled person, of what the speaker said was wrong. I replied, “I maintain my position, my interpretation, and my lived experience, but thank you for sharing your perspective!” This comment is becoming more and more common as disability rights begin to enter conversations of equity and inclusion and the mental health crisis continues to rage on. While both of these issues deserve to be centered in mainstream discussions, the issue is that it is pushing us in the wrong direction. This comment implies that physical disabilities are easy to accommodate and that mental health and physical disabilities are two completely separate experiences. As a disabled, mentally ill person – I believe this could not be more wrong. Reality Check Simply put, it is hell to get accommodations for physical disabilities. First, we have to receive a formal medical diagnosis – a significant barrier to those facing systemic oppression on the basis of race, gender, sexual orientation, class, you name it! Then, we need to get our physician(s) to sign off on paperwork requesting accommodations – and when you only see your specialist(s) every few months, your accommodations can be severely delayed. After that, you have to get in touch with your landlord, employer, or on-campus disability service provider, or as I like to call them: on-campus disability service denier. From there, you’ll set up an intake meeting where you discuss what accommodations you would like to receive in your classes, assignments, and exams. At my university, we have to opt-in to our accommodations in all of our classes and for all of our exams. This is made more difficult by terribly designed websites and short opt-in periods – and if you miss your period, you miss out on your accommodations. Finally, you often have to self-advocate for your accommodations before ignorant and/or ableist professors, who might accuse you of being lazy, faking your disability, taking advantage of accommodations, you name it! If you are fortunate enough to have professors upholding their legal and contractual requirements to reasonably accommodate you, you can skip the step where you contact your student union’s legal or advocacy resource as you fight for your basic accommodations. Easy enough, right? I will allow that many people promoting this rhetoric misunderstand the reality of getting accommodations for physical disabilities. For some reason, they always believe the only physical disability out there is having a broken leg, and that accommodations are limited to elevators and accessible ramps. I will allow for the fact that a misunderstanding is occurring, but I will also hold these people accountable for using my lived experience as some sort of bargaining chip-slam dunk on inaccessible systems, instead of recognizing it as the valid and consequential lived experience of their disabled peers. Attitude Check When I hear the comment as a mentally ill, physically disabled person, I get the vibe that these people believe that people with physical disabilities are less subject to ableism, discrimination, and stigma, and have no mental illnesses themselves. As someone with an invisible disability that has used mobility aids, I’d like to take a second to recognize able-passing privilege, where you are mainly able to go about your day without being subject to discrimination on the basis of disability. Don’t get me wrong, mental illnesses can definitely face discrimination and stigma, especially when they have physical manifestations. But there is an undeniable privilege in being able to play yourself off as non-disabled and avoid some unpleasant interactions. Going back to the broken leg example, the comment implies that physical disabilities are easy to understand and face little stigma. After all, a broken leg is a broken leg – it usually doesn’t get worse, it’s usually temporary, and no one blames you for breaking your leg. But summarizing the physical disability experience into a broken leg is incredibly problematic! Physical disabilities are incredibly diverse and manifest in many different ways. Speaking as someone with a chronic, episodic physical disability – how my disability presents itself and the accommodations I need vary day to day. Compared to a broken leg, that’s much harder to understand! The broken leg monolith also implies that accommodations for physical disabilities only include elevators and accessible ramps. Not only is this wildly incorrect, it constrains the expansion of new accommodations! At my current school, I’ve been offered a laptop, extra time, and word processing for my hand dexterity issues, and ergonomic chairs, height-adjusted desks, barrier-free classrooms, and close-proximity classes for my mobility issues! If we only consider elevators and accessible ramps as physical disability accommodations, we deny so many people the basic tools they need to succeed. Check-In Aside from dismissing the barriers, discrimination, and stigma faced by persons with physical disabilities, the comment ignores the intersection between mental illness and physical disability. The two are mutually reinforcing: poor mental health worsens symptoms of physical disabilities, and unaccommodated physical disabilities can worsen mental health. People with physical disabilities are twice as likely to have mental illnesses than their non-disabled peers, and ignoring this fact ignores how much the two “categories” have in common. We are all subject to systemic ableism, stigma, and discrimination. We are all being denied our legally guaranteed right to reasonable accommodation, and our right to equal access to education and employment on the same basis as our non-disabled peers. Many of us are both physically disabled and mentally ill! One last nuance before we wrap up: it is hard to get diagnoses and accommodations for mental illness. I would never deny that. I have jumped through those hoops and over those hurdles. Mental illnesses are subject to different types of medical diagnoses, procedures, and treatments. They face different types of barriers, discrimination, and stigma. They require different accommodations than physical disabilities. They definitely face misunderstandings and misconceptions about their nature and manifestations. I think we can all agree on that. But we should also all be able to agree that furthering the misconceptions and stigma towards other types of disabilities is a futile and undermining attempt to better our respective rights. Why are we trying to tear each other down when we can work together? If you want to play oppression Olympics and vie for that gold medal, I can’t stop you. But when you realize that the medals are only awarded to weigh you down, you’ll know where to find me.

Larissa Martin

When Caregivers Comment on My Weight as Someone With Cerebral Palsy

I am a person with a disability. I have cerebral palsy and am an amputee as well as being a wheelchair user. I also have an intellectual disability. I cannot transfer, so I must be lifted in and out of cars, restrooms, etc. So, this being the case, I have had to rely on aides and family to lift me. Over the years, my weight has fluctuated. I have gone on diets twice; once I was successful, but the last time I wasn’t. Eventually, I changed my lifestyle and have been vegetarian for the past three years. I love to eat healthy most days. I do enjoy some junk every now and then. I have had issues with body image and how I see myself. However, I am in a good place with that at this point in my life. That’s not to say I don’t still struggle; it’s a work in progress and it always will be. I have had two different personal care aides over the years, one for 10 years. My most recent aide has been my aide for about four years now. The one thing they have both said to me at one time or another is, “Either I am getting weaker, or you’re getting heavier.” Recently, my current aide said this — and mind you, she knows my history with my other aide and how I felt about myself for years. I don’t think she said it to be malicious; it was more of an off-handed comment. I said, “I am sorry,” because that has been my go-to response whenever an aide or family member makes a comment about my weight. I immediately go to that because I feel like it’s my fault, even though I know it’s not. This time, when I apologized to my aide, she replied, “What does it have to do with you?” My mind was blown! In my mind, it has everything to do with me! How could it not? If not, why say that knowing how sensitive I am about this topic? When people do this, they’re pretty much saying I am fat and need to lose weight. If you were in my position, wouldn’t you feel offended and hurt by comments like this? I would rather have a conversation instead of this constantly being said to me for years. It makes me question myself and my self-worth. Another comment I heard from my dad when we got my first accessible van was, “I am so glad we have this now.” I interpreted that as, “Thank goodness I don’t have to lift you anymore.” That might not be what he intended, but that’s where my mind went. In society people with disabilities, visible or invisible, have enough to worry about, whether that be accessibility, employment, or their own struggles with their disability. We don’t need caregivers or family members making comments to make us question our self-worth as individuals. We are enough just as we are. I think people do this because they don’t want to have hard conversations. They don’t know how, and they think this is a good way to approach this subject. Or possibly they’re just trying to be hurtful. Either way, it’s not OK for something like this to ever happen to you. Everyone’s weight fluctuates, disabled or not. I think if able-bodied people had this done to them, they would understand how upsetting it can be. We don’t need to change — society needs to accept us as we are. I may or may not be getting heavier, but your words hold more weight.

Christina Lisk

Why Hard-of-Hearing People May Speak Loudly

To the Man Who Tried to Shush Me, I don’t know how much you heard and understood when I complained to my partner about you and how you tried to quiet me down. The way you waved your hand and said “talk quieter,” though to me, it sounded as though you said, “trk qrter.” I saw the way your ugly lips moved and your hand gesture, and that was how I knew what you were trying to say. You didn’t give a damn that I was trying to watch my diction, or how often I have to watch my diction to accommodate everyone like you. Projection is how I understand my diction in full instead of slipping back into old habits pre-speech therapy. In crowded restaurants, such as the one we were in, my speech becomes harder to hear even inside my own head. It becomes a strain to “trk qrter,” as hearing people like you demand, yet you never consider how much strain goes into fulfilling your entitled wish. Yes, I say entitled, because of how much we as hard-of-hearing people strain ourselves to accommodate you. We go into speech therapy to become what you consider “well spoken,” lest we risk ridicule and exclusion. Conversations with you involve listening to sentences filled with hole punches, and all the while, every word is dulled with sandpaper. If there’s more noise in the background, it’s like listening to your Swiss cheese sandpaper voice in a fog. To appear more “acceptable” in your view, we inference and scramble for context to clarify words, all while making our speech “acceptable” enough so we’re not called “stupid” or “r*tarded.” Hearing aids cannot solve these problems, as you might think, because inferencing is counted as “hearing” in a hearing test. The list of words used for the test is narrow, and after a lifetime of testing, it’s easy to understand that “sssbll” means “baseball.” Tests of pure tones mean you are searching for the tiniest beep, and are expected to strain in the process. Even the littlest blip counts as “hearing,” no matter how much strain is involved to get it. The test is black and white, where either you hear nothing or you’re “fine.” There is no room for the struggle that comes with Swiss cheese sandpaper in a fog. Even if hearing aids and a test with more shades of gray could fix the problem, the lack of insurance coverage puts new hearing aids out of reach. While my model is functional enough for me to participate in everyday life, it’s 11 years old and heavily outdated. The new ones start at $1500, if someone is lucky, and can easily go up to $3000. Did I mention too that hearing aids aren’t covered by health insurance because they’re considered “elective”? The insurance companies ask, “why can’t you get surgery or a cochlear implant?” I’ve had 10 surgeries to fit into your hearing world, and my loss comes from severe scarring of the eardrum from infections and a cholesteatoma. A cochlear implant won’t help me accommodate you. I thought about telling you all of this in the restaurant, but I was so fuming that I didn’t yet have the words to tell you everything I’ve said now. All I could do what vent my rage with my partner, and not give a damn whether or not you understood what I said. By the time you left, I had enough of straining to hear. That’s why, when you said “fnk u fr lryng ur viz,” I responded with a frustrated face. I hoped you would project for a clearer tone, and I wouldn’t have to pick apart your voice. Such was not the case as your lips moved repeatedly with the same tones, but I was too tired to read them anymore. Tired not just from straining to hear in conversation, but tired from the everyday contradiction. How our speech must be “just right” to fit into your world, and we must fatigue ourselves the moment our compensation becomes your inconvenience. Someday, you will know this world too, as hearing loss is inevitable with age. You will feel the struggle to speak and keep up in conversation. Hearing tests will fail you too, and you will be left either in debt or isolation. What you gave me today will come back in the form of another man trying to shush you, and the forced role of accommodator. It’s a lot easier to tell you over a computer, where I don’t have to strain to hear or worry about audible speech. Should I see you again, I’ll put this letter in your hands, as well as anyone who acts like you. Perhaps then, you will understand, and see how my strain will become yours. With the utmost fatigue, Christina

Community Voices

This past weekend - Friday June 24th - I got to see Halsey at the Shoreline with my two best friends. To be clear, Halsey was AMAZING! But the venue was shitty...

I was prepared. I brought my handicapped placard and researched the venue before going. I purchased tickets online that said handicapped accessible tickets with a companion so I got the seat with a handicap and companion seat and also the seat next to the companion - three tickets in total. A week before the concert I checked again to be sure there was handicap parking and indeed it said handicapped parking available.

The day of the concert we got to the venue, and parking was a mess. We asked eight parking attendents where handicapped parking was, and they just pointed - and didn’t say anything. We finally parked but it wasn’t handicapped parking. The parking lot was uneven and gravely and not paved, which is kinda difficult when you're in a wheelchair. We got out of the car to assemble my wheelchair.

We had to walk a little ways to get to the venue. On our way over, we saw the parking lot where all the handicapped parking was. Austin asked one of the staff members if we could park there and she said yes just ask one of the shuttles to shuttle you back to your car and put his hazard lights on. But, once Austin got his car but yet another staff member said he couldn’t park there, and made him go back to his original parking spot. It was confusing and disorganized, as if people at Shoreline aren’t used to disabled people coming to concerts with their friends at all.

If people get treated like I did, that’s kind of not surprising.

We got to the venue and they wanted to do a bag check - including looking at the bag where I carried my catheters. It seemed like too much of an invasion of privacy, so I left the bag in the car… It turned out that the bathrooms (porta-potties) weren’t wheelchair accessible anyway… even though they were supposed to be.

We got to the gate to scan our tickets. I asked where the accessible section was. They just pointed and said on the other side of the theater. It turned out that the seats we had that were supposedly handicap accessible …weren’t. My friends Austin and Brooke talked to one of the staff and told them the situation. The staff member looked obviously irritated, pulled all three of us aside and radioed her supervisor. Austin was still talking to the staff member still telling her the situation and then she made a finger gesture telling him to be quiet.

Her supervisor came and after hearing the details, she looked at me and asked, “Can you walk down eight steps?” I said no. Then she asked “What if one of your friends carried you down?”

I …couldn’t even believe they asked me that. I was born with a birth defect. I have spina bifida. My spine was formed outside the skin, and my nerves weren’t formed in my legs. Right after I was born, doctors had to put my spine back into my body. I can’t feel below my knees, so I'm paraplegic. I don’t expect strangers to know my whole history but… I was in a wheelchair and I bought handicap accessible tickets. Why was she asking me that?

I turned and looked at Austin and Brooke and I just shook my head.

The staff lady rolled her eyes and sighed. Then she said, “Let me see what I can do.

Eventually we got to our seats, and they were accessible, but they were segregated off in the corner.

And I don’t know how I feel - maybe disappointed? It's a RARE moment when I’m feeling really good about navigating as a disabled person in public spaces. It is also RARE to get to hang out with my best friends. I go to dialysis three times a week, and right now I don’t work, so the tickets were an expensive treat. Most of the time I’m feeling tired and sh*tty, but on Friday, I felt good - it was going to be a good night.

And Shoreline ruined it.

…But Halsey was AMAZING!

Charlie Carr

How EVV Is Violating Privacy Rights and Costing Taxpayers Billions

Electronic Visit Verification (EVV) is a system of tracking personal care services such as in-home care that are funded by Medicaid. EVV smartphone apps are designed to verify a care worker’s identity and the date, time, and location where personal care services were provided. EVV apps utilize GPS, biometrics, and/or other invasive technologies, and have been widely criticized by the disability community for their violations of privacy and how they impede the independence and freedom of movement of people who receive personal care supports. One of the primary motivations behind including Electronic Visit Verification in the 21st-Century Cures Act was based on the myth that there’s rampant fraud in the personal care services program nationally. The Congressional Budget Office (CBO) in 2016 projected that $290 million would be saved over 10 years if EVV was included in the bill and this projected savings was a “pay for.” It has been widely reported that the EVV industry was lobbying for its inclusion with the position that EVV was the best way to stop fraud, waste, and abuse in personal care services (PCS). It’s more than a coincidence that it would also launch a requirement to purchase and maintain their software in practically every state. Despite national disability and privacy organizations vigorously protesting EVV, the bill passed and included it. However, the law simply requires that location is one of the data elements that need to be gathered and reported by states. It doesn’t specify or mention the use of Global Positioning Systems (GPS) or biometrics like facial or voice recognition. It was CMS that required GPS through guidance. The EVV industry was already selling their monitoring systems of personal care services workers to state Medicaid agencies with the promise that they would meet CMS guidance and, if used, would be complying and not trigger Federal Medicaid Assistance Percentage (FMAP) penalties imposed by the legislation for non-compliant states. Disability rights advocates, unions, state Medicaid agencies, disability trade organizations, personal care services workers, and many more affected people were stunned. In the case of California’s IHSS program, the largest self-directed (the disabled person is the employer, not an agency) program in the country with 400,000 disabled personal care services consumer employers who were successfully using a web-based portal reporting system prior to Cures, it meant that the state had to discontinue this very effective tool to comply and to not be penalized with cuts in FMAP. Once issued, this CMS guidance forced people with disabilities and their personal care services workers to give up their right to privacy. The EVV industry sells states canned programs that use GPS and biometrics that track the physical location of the workers and by default the people with disabilities who employ them. EVV is one of only two federal programs that track recipients of service; the other is the Bureau of Prisons home confinement program. An unintended consequence has been a severe exacerbation of the personal care services workforce shortage. EVV systems are subject to state modifications and developed to easily incorporate them which has resulted in onerous and unnecessary practices in several states that make it extremely difficult to navigate and use location requirements daily. Some states use “geofencing” that sets boundaries that disabled consumer employers are restricted to outside of the home. If their personal care services worker’s GPS marker is detected beyond the preset boundaries, it triggers an “exception” that then leads to a review process by the state/vendor that often holds up payment to the worker. It’s easy to understand why workers are reluctant to join this workforce, be subject to surveillance, and generally be paid less than fast food chains with no benefits. As EVV continues to go live in the states, an alarming number of problems reported by self-directed PCS consumer employers are arising that undermine their control of their employees and make it practically impossible to recruit qualified workers to meet their needs. Thousands of people with disabilities across the country are being forced to manage their personal care with significantly less assistance than they actually need due to the imposed restrictions and worker shortages caused by EVV. Many are being forced back into nursing homes, which is a civil rights violation under the ADA Olmstead decision. This poor public policy is because of the alleged fraud, waste, and abuse projected in the original EVV section of the 21st-Century Cures Act. In 2022, Applied Self Direction, a non-partisan technical assistance organization, analyzed General Accounting Office (GAO) data reported by the National Medicaid Fraud Control Units (MFCU) and found that the actual numbers in the self-directed PCS programs are at an annual rate of .0002% of fraud convictions that totals $6,065,610.The federal annual Medicaid expenditures for self-directed programs are approximately $100 billion. The incidence of fraud, waste, and abuse in self-directed PCS is negligible and is far exceeded by the amount of Medicaid HCBS money spent on EVV systems purchases and maintenance. For example, in Texas, from FY 2017 to FY 2021, the state spent just over $1.3 billion to implement EVV. This information was obtained through a FOIA request, and the shocking amount of money spent to date is a bellwether of what has been spent in the 35 other states that have implemented EVV. Suffice it to say, the EVV industry that provides the software, training, and maintenance paid for by Medicaid is thriving and policymakers must address the very clear data that shows the expense of EVV far outweighs any benefits derived. PCS employers and workers and their allies realized that the only way they could beat back the dangerous effects of the 21st Century Cures Act was to push for legislative change in Cures 2.0, filed by Representatives DeGette and Upton in 2021. As a result, section 409 prohibits the use of GPS and biometrics in personal care services. It’s important to understand that PCS includes home care agencies as well as self-directed programs. Home care agencies have been using GPS and biometrics as part of their business model for many years prior to the original 2016 legislation. Agencies that employ PCS workers want to continue monitoring their employees, but the vast majority of self-directed PCS consumer employers do not. The power and influence of the home care industry could kill the EVV protections that self-directed consumer employers have fought hard for over the past five years. Anticipating this, four national organizations led by the National EVV Consumer Employer Coalition and ADvancing States met several times to reach a consensus on compromise legislative language in Cures 2.0 that separated self-directed PCS from home care agencies. The language gives states the flexibility they need to properly implement EVV but prohibits the use of GPS and biometrics in self-directed PCS programs. Thus, agency-based home care would not be subject to this provision and can continue using employee surveillance. The hope is that both groups can work together to forge a good faith relationship that will embrace the compromise legislation and encourage the congressional Energy & Commerce Committee to adopt it. It’s a sensible solution that allows for the protection of privacy and consumer employer choice and hopefully blunts the effects of worker shortages for self-directed programs. The most important outcome that outweighs any differences is that both groups can continue to work together to keep people with disabilities and elders out of nursing homes and living with dignity in the community. The success of not only this bill but future legislation and policies and programs hinges on how well the disability and elder communities and the programs that serve them can find common ground to keep and maintain independent living and aging in place values at the forefront.