Disability Lead’s first ever storytelling event!
If society only knows one kind of story about disability, how does that create the misunderstandings, fears, and stereotypes that make our lives as disabled people difficult? How can we interrupt these myths through authentic storytelling and build more inclusive communities rooted in connections?
In this virtual event, we heard stories of disabled leadership from some of our 2023 Fellows. We listened as they opened up about community, ableism, diagnosis, and how disabled people innovate solutions to problems society puts in front of us.
This event was inspired by Civic Saturday gatherings, an intentional gathering to strengthen our social fabric, center challenges we are facing as a community and imagine new possibilities. Civic Saturdays are a program of Citizen University, an organization that is working to strengthen civic culture and democracy.
We were so inspired by this gathering that we decided to compile a resource list of more stories about disability, told by disabled people themselves. Please explore this list which, while by no means exhaustive, is emblematic of the power of authentic stories to challenge unaknowledged biases.
>>EMILY BLUM: Welcome. I'm Emily Blum, the executive director of Disability Lead.
We are so glad you are joining us today. My pronoun is she/her and an image description, I'm a white woman with brown shoulder length hair, I'm wearing glasses and in a bare-bones office today. We sent out a guide to access key accessibility features in zoom, including cart and ASL. If you have questions please reach out. My colleagues will help troubleshoot any issue. This afternoon, we are so pleased to welcome you to our first ever storytelling event. We have four incredible and talented disabled leaders, part of the 2023 institute, Disability Leads annual program for emerging leaders, Amy, Kruti, Gizelle and Brittney are going to share stories with you. I'm so honored they are sharing them today. All four stories touch on themes of seeking dying know cease, building community, combatting ableism and how each innovated solutions to problems society put in front of them as disabled people. These stories are distinct yet connected because stories of disabled people, though they may not be widely told or known are universal. They are human and connect all of us, those who identify as disabled and those who do not.
Last year I participated in a fellowship called Citizen University. CU's mission is to strengthen culture in our democracy. We talked about what ails modern society and for me, I kept returning to the notion of lack of civic friendship. Not to get too academic and believe me, it is not often I reference Aristotle, yet he defined the friendships as they relate to politics and person. The first is relationship based on usefulness. The second thrives on the delight or enjoyment of being in another's company. The third and what I challenge each of you today to seek out is civic friendship, the kind that requires a commitment to the other person's good and shared understanding of what that good is.
Today that commitment to others' good is fundamentally missing. Our news and social media are too often ugly and -- UG degree. You joined us today not to necessarily fix what ails us, but to listen to stories of humanity and expand shared understandings. You joined us to support Amy, Kruti, Gizelle and Brittney because they are your friends, colleagues or loved ones. Maybe they are total strangers but you are interested in hearing their ideas and the journeys they have endured. Simply put, today's
gathering is about holding people you don't know in your heart, making room for their voices and needs. Truly it is the only way we will achieve the equitable and inclusive communities each of us wants. It is what is required to be passionate citizens of the world.
Next week marks the 33rd anniversary of the Americans with disabilities act, that protects the rights of disabled people. As we celebrate all that the law has provided, we are still realistic enough to know that much more needs to be done if our community and everyone in it is to achieve true equity. At Disability Lead, we believe that change will come as disabled leaders have greater power and influence at decision-making tables. Our four great speakers today and many more both in Chicago and across the country are leading the way. With that, our stories. I would like to welcome Amy Johnson to share first. Amy talks about finding her diagnosis later in life and how to show up at work as a result to disclose or not to disclose, that's a question at the heart of Amy and many of our collective journeys. Amy talks about the power possible when showing up proudly with one's disability identity and desire to make a change. Welcome Amy.
>>AMY JOHNSON: Hello, my name is Amy Johnson and my pronouns are she/her. I'm a pale white woman with red hair and an orange top.
I have a lot to say. I can't always find the words. Sometimes I can work for hours without stopping and other times, I'm easily distracted. I will go above and beyond your expectations but can burn out sometimes. I will be honest about how I feel about your -- about something. But I won't look you in the eyes. I have some super problem solving skills, yet I have a few sensory sensitivities that make life difficult. I can paint scenes from memory. But I have trouble recalling what was said in the last meeting. I am many things, a designer, a wife, a painter, a dog mom and apparently, I'm also autistic.
I went on for years not quite understanding what was in my head and sometimes I wasn't able to cope with a typical job environment. I went to doctors on and off, but never really got answers that fit. There were many times working eight hours in a bright, loud, open office sent me into a spiral. I have gone to evaluations saying I talk over people and that I don't show enough gratitude. There was one time I wasn't hired for a contract position and received a list of all the reasons why I wasn't a good fit for the company. They said that my facial expressions were odor inappropriate when surprised or stressed, that I was way too intense and went off topic too often with clients.
In 2016, the political climate in the U.S. had me in crisis. It was to a point that the bigness of worldly issues in addition to the personal ones I have always had were affecting how I showed up at my job. I restarted my mental health journey at that point to get to the bottom of what was causing my difficulties at work. That was the year that someone finally suggested something I hadn't heard of before, that I may be autistic.
Yeah, I know what that can bring to mind. Trust me, I have heard the stereotypes and cliches. I have heard that people would never know that I'm autistic. I have heard people say they feel sorry for me. I've had people treat me differently or convince themselves that everyone is a little autistic. All of these phrases devalue my mental health needs and make something very big in my life smaller for them. In reality, autism spectrum disorder is a developmental disorder and characterized by difficulties in social interaction, communication and repetitive patterns of thought and behavior. And it sometimes comes with sensory sensitivities, such as sensitivities to light, sounds, tastes and textures. I personally have extreme reactions to bright lights and loud noises, which give me massive headaches or make me NAUSHous. Some have trouble with clothing textures or different foods. If an autistic person reaching their limit for the day, they may be sent into sensory overload which can lead to meltdowns and sometimes avoid eye contact and have intense special interests or stem. Stemming is a form of sensory comfort involving things like rocking back and forth, flapping hands, looking at flickering lights or even smelling certain smells.
For the longest time I wondered why people were so resistant to believing I was autistic when I revealed it, especially because I'm late diagnosed. In recent years, it has become clear to me that the reason is rooted in their original development of the diagnosis. You see, I identify as female and autism diagnosis are male-dominated at this point in history. You don't hear about women being on the spectrum very often because the original ASD diagnosis was developed around young boys and how they behaved. People who identify as female are harder to diagnose because we behave differently and are better at masking or disguising our true nature by mimicking others. We blend in better. A lot of autistic women are going undiagnosed until their 30s or never get diagnosed at all. This is a problem because it means a lot of autistic women don't get the resources they need earlier this life to be successful later in life. This is both in their professional and personal lives.
When I first found out I was autistic, I didn't believe them. I was what, 27? Surely someone would have told me at any point in my life. And believe me, those same extreme stereotypes we have heard, I definitely heard them and it filled me with misconceptions of what autism was and made me afraid I would lose my job if anyone found out. This clay shay that society has in their head makes companies worry we're not capable of producing meaningful work and value. But in reality, a study run by the Harvard business review says people on the spectrum are actually 20% more productive than neuro typical peers. Especially if they are given the right environment and right opportunities. You see, nothing actually was changing in my life. I was still me, just atypically labelled. This diagnosis was a good thing. It meant I knew what I needed to bring my best self to work and helped me to value my mental health above all else. I found that I would not be losing my job, in fact, I gained respect from co-workers for coming out and verbalizing what I needed to communicate better.
Being on the autism spectrum doesn't make me a worse teammate and doesn't mean I can't do my job, it just means I'm a different teammate and I have different ways of communicating. I learned that I needed noise cans cancelling head phones to tune out white noise from the speakers in my office. I needed bullet lists and action items at the end of every meeting in e-mail. I work best with digestible chunks of information and I'm task oriented. I allow myself to take more breaks and took advantage of the wellness rooms when I felt sensory overload. More recently, I learned that I thrive in a work from home environment. You see, COVID work from home protocols really helped my job performance. They stripped away the social barriers I had in a traditional office and I didn't burn out half way through the day because of human interaction. I also learned that the reason I'm so good at what I do is because I think in shapes, colors and patterns. I'm great at using common visual elements to create
logical user experiences for my job. And puzzles don't phase me because solving problems is my strength. When I'm passionate about something, I can hyper-focus and move mountains.
My journey has taught me that I hack the world around me to suit my needs and makes me incredibly efficient. You see, I approach design from an angle no one is expecting and that drives innovation. Since my diagnosis, I have been inspired to share my experience with companies across the world from Seattle to Scotland. It is so very important to me that this message is heard. Before people around me didn't talk about mental health and getting the resources they needed to do their best work. But now they do. Over my years of speaking, I've been lifted up by colleagues. Collaborated with other disabled folks and found my voice and direction. I have been given -- I have been able to give companies specific advice on how to become inclusive in hiring practices, work environments, team communication. I also explore topics like the discussion around soft skills and how neurodiversity is inherently intersectional and examples of healthy culture and allyship. I use my diagnosis and identity as a catalyst to inspire change in organizations. I do this also so other people like me might have more psychological safety in their future. Autistic folks shouldn't have to disclose if they don't want to. And personal quirks should be accepted regardless of what a person knows or doesn't know about someone else's mental health.
I am a late-diagnosed, female, autistic product designer in tech. I have the platform to speak to the masses with my communities to promote healthy work environments through mental health as a lens. I leave leadership with actionable feedback, practices and resources and my mission is to make change in this world through neuro diversity and tech and I'm positioning myself to be a cog in that engine now. Thank you.
>>EMILY BLUM: Thank you, Amy. We celebrate you. Let's give Amy a round of applause. Next I would like to welcome gill Gizelle Clemens sharing her journey of medical racism navigating her life and career. Female patients and patients of color are more likely to have patients dismissed by medical providers and Gizelle's story shows the hard work to get the care needed and deserve. Take it away.
>>GIZELLE CLEMENS: Thank you Emily. This is Gizelle Clemens speaking and my pronouns are sheher. I'm a black woman with short black curly hair and glasses and necklace. I have a cream color dress and basic black blank wall behind me.
We live in an ableist society and it is killing us. Abolitionist educated and organizer TL Lewis defines ableism as a system of assigning value to people's bodies and minds,
based on society constructed ideas of normalcy, productivity, desireability, intelligence, excellence and fitness. This is the first time you are hearing this, welcome. And know that I was you two and a half years ago. Back then, I had a pretty good reputation of being an advocate for work places that would not make conditions worse to lead to depression and anxiety. This was largely informed by my 10 years of experiencing how depression and anxiety impacted the way I showed up in the world and for
myself, for at least a decade and I didn't want others to experience the same. However, it wasn't until I started to craft this story that I realized that while I lived with invisible disabilities for years, I never use this term. I only referred to them as mental health issues. It took a physical health issue that resulted in an acquired physical disability, a spinal cord injury for me to identify as someone with a disability. By not accepting my invisible illnesses could also be disabilities, I couldn't make the connection to ableism. Therefore failing to realize that I had internalized it.
In 2019, I started to get sharp pains in my lower back. I went to see my doctor and she sent me to get a CT scan. By that time, I had been self medicating and taking old pain killers, the kind that causes constipation. I was a few days shy of my 90 day probation of a very demanding job and couldn't afford to be in pain. I sought out quick fix remedies until getting a proper diagnosis and treatment. I was surprised to hear the diagnosis was constipation. But remember pain killers caused it and perhaps it was something else. I followed up and was referred to a gynecologist to assess if it was related to my menstrual cycle or possibly contributes. The you will -- cysts were not the culprit. The little voice in my head said to follow up, I was too distracted by a toxic work environment and complaint I filed against a member of the C-suit. I was afraid and feeling powerless and my health issues were the furthest from my mind. I was franticly working to prove my value and relevance so I could keep my job. I was the one harmed but I also knew I was the one with the least amount of clout, privilege and power in this situation.
My mental health deteriorated and the pain intensified. I turned to different approaches for my back pain which temporarily helped. But I knew I needed to address the back pain. Three months later, the complaint was resolved, but I was still working with my abuser. And to manage, I was in therapy every week. Did I mention I was also fighting for proper compensation for the work I was doing, being expected to do and the skill set I walked in with that was undervalued? Once this was finally resolved, parablely unfavorably, I set my sites on leaving the environment and then the pandemic hit.
When the pandemic began, my massages and acupuncture visits ended. We are in a constant battle with structural racism, sexism, ageism and capitalism, which I would later learn are all rooted in ableism. My desire to be seen as productive, desirable, intelligent, excellent in a toxic work environment, I suffered and watched and felt as the pain grew. Seven months into the pandemic, when I felt safe enough to get around, I noted my gait had changed. After about 10 minutes of walking, I would start walking with a limp in pain. As we started to go into the winter months, fear of another lockdown and vanity, sent me looking for answers for what was going on in my body. Over the course of four weeks, I saw five different doctors with four different specialties between them. Including a trip to Northwestern's emergency
department, where I was discharged against my will after demanding an MRI. The fifth doctor, the neurologist took less than 10 minutes to assess that there was something neurological going on. This black woman gave me a script for an MRI and blood test with potential diagnosis of multiple sclerosis.
That was my biggest fear as I went to get the MRI done two weeks later, only to find out, it was something that scared me even more. Cancer. The scan showed a tumor embedded in my spinal cord from T 6-2 so and I was admitted for surgery. I woke up from the almost eight hour surgery paralyzed from the abdomen down on the left side of my body. I can't remember if I cried. I imagine I did. But what my camera roll suggests from the time I spent in the hospital, is that I was more concerned with having a record of who was caring for me during different shifts. I could not trust that the care I received wouldn't result in some kind of harm. The last year and a half had proven I couldn't. And so I needed to keep my aunt Carol who was a nurse at the time updated on every shift change.
I have no pictures or documentation of myself after I was admitted. But this was the turning point for me. I was going to show up for myself fiercely and with authority. I was not powerless in this situation. And I would be raddicly present in my own healing. I had eight months of disability and rehab to settle into this new practice that allowed me to progress to walking with a cane. But all that agency and power went out the window when I started a new job. I never disclosed my disability at my new job. I was afraid it would be weaponized and work to prove to no one but myself, that I could perform at this level in my new body. I worked for 15 weeks straight and didn't take a single day off. I bragged about it as a badge of honor, leaving out the fact that I had compromised my mental health and neglected the day-to-day necessities to advance in physical rehabilitation. Internalized ableism had won again.
Think about how internalized ableism is ruling your life. Are you denying the fact that you have an invisible or physical disability? Are you enforcing policies that contribute to hostile work environments? Are you assigning values to your body and mind or the bodies and minds of others based on society constructed ideas of normalcy, productivity, desireability, intelligence, excellence and fitness? This is my call for everyone to do things differently so that ableism does not kill us. We need to use the words ableism and anti-ableism in our language when describing what is happening to us. And the many solutions, including recent movements focusing on rest as resistance and self care. We are up against systems of oppression and we cannot self care ourselves out of it. Those in the disability justice space recognize this and it is important we ground these well meaning practices in anti-ableism. I ask you to examine your relationship to disability and its many different forms, to better understand how this impacts your life. Keeping in mind that you do not have to be disabled to experience ableism. This needs to be a society problem that we all want to solve. It is killing us. I would love to help contribute to an inclusive antsy-ableism movement. Let's start here. Let's start now. Thank you.
>> EMILY BLUM: Thank you Gizelle. We celebrate and aproud you. Next, Brittney Hyde will tell us about being a woman with a chronic illness navigating high school, college and her career, talking about her journey towards understanding she is in fact disabled and further her uncertainty of stepping into the disability identity because she may not appear as disabled or disabled enough. These are feelings that many of us, especially with visible disabilities have dealt with. Brittney the floor is yours.
>>BRITTNEY HYDE: I'm Brittney Hyde. My pronouns are she/her, a white woman with brown hair and wear glasses. I'm wearing a gold top today and in my home office, which is the basement in my home. My story is titled disability, a community.
In my work, I often come across people who learn sometimes in the very moment we're speaking that a diagnosis they have are considered a disability. I can tell that this
information has caught them by surprise and I can feel their sense of unease, even through the phone or zoom screen. They're often at a loss for words. Since our society has negative outlook on disability, this is not information people tend to welcome with open arms. It can be scary and confusing.
Not that long ago, I was just like them. I didn't realize I was disabled either. It wasn't until I was 28 years-old, applying for new jobs that I found my diagnosis on a list of disabilities on self identification of disability form. At first I was shocked. How could I not know having Crohn's disease meant I was disabled?
The doctor who told me the diagnosis didn't help. I was 16 years-old feeling out of place in the children's hospital. I was used to being the visitor, not the patient. And not to mention all the things made it clear this space was a space for children, something I felt I was not. I was old enough to understand the magnitude of the space, but young enough to want to feel the closeness of my parents where it was safe. I was scared. I was in so much pain and my body so weak, any time I stood up, I lost
consciousness. I was so confused, how did I get here? I was a typical healthy kid a few weeks ago.
When the doctor came in, she told me I have Crohn's disease. I believed their experience to be what my future looked like and my mind raced. My body was too weak to keep up. Trying to put on a show for the adults around me through the pain and fatigue and now this, it was too much. When I broke down in tears, the doctor awkwardly dismissed herself. I just laid there totally out of control of my own body as the thoughts and -- the thoughts continued to race.
An hour long surgery led to three month long painful recovery. I spent most of my time horizontal and needed help breathing. I missed two months of school and dreaded going back. The nature of my disease was embarrassing. The pain influenced my movement and made it obvious I was not well. I so badly longed for the community I had at school, I couldn't bear the idea of facing classmates, the questions. I wondered if I would feel a part of the community again. From then on, I would do my best to hide this part of myself. If I turned down food at the restaurant, I let people comment that I was weight conscious health nut rather than the truth. Eating it would cause serious pain. I passed off the strange movement or occasional vocalization due to pain as injury. I wrote off light headedness as dehydration and not internal bleeding and anemia.
As I became healthier, hiding was easier but flares were not predictable and caused disruption to my life and missing out on life events. When it affected others, I would find myself stuck. How do I explain I'm not in control of my inability to be present. This forced me to share my diagnosis with people I was close to, but with little detail as possible and wishing I didn't have to.
While my peers were spending their first few days of college in knew found freedom, I spent it in the disability service office giving information to strangers I like to keep secret and establishing care with a doctor to treat me in an emergency. I could flare at any time. College and joining the workforce were hard on my body. Eventually I learned how to take care of it. I was a master at detecting warning signs and better my chances of avoiding full on flares.
Once I gained a little more control, I gained a little more confidence. I experimented with telling people I worked closely with. It felt good to share what a large part of who I am but I hated the pity in my life or the barriers it could create. Eventually, I learned if I shared this information with anyone who had influence on the trajectory of my career, it could lead to eliminating opportunities for me.
I worked for six years as a special education teacher. I advocated for disabled students but I wasn't the best advocate for myself yet. I knew I was sick but I didn't know I was disabled, too. There were times of the year that demand and stress were so overwhelming it would cause a flare. After some time, I understood it happened like clock work. The symptoms added up. I developed chronic pain and new diagnosis I had to learn to manage. I was unhealthy and unhappy.
This along with the pandemic led to the decision to leave teaching. The decision to leave was tough. Although I had not planned on teaching after school, I had fallen in love with the community I built in my classroom, where it was safe to be vulnerable with one another because it allowed us to connect and grow. A space I did not have while in high school.
Now, since then, I have learned that I'm part of the disability community myself. But realizing I was disabled wasn't enough. I had to learn that I deserved to own that identity. When I realized it was a disability, I quickly felt like an imposter. What would other people I know with chronic illness think about me identifying as disabled or people who are actually disabled think. Imposter syndrome is not a stranger to the communety. We BA thele ableism. Our society judges all facets of being hue plan. If I don't fit the mold, do I get to belong?
This is a toxic practice. I have learned that by discounting my own disability, I was discounting others'. Embracing my disability identity has improved my work and well-being. I have learned different ways to disclose and tips for avoiding the awkward pity filled reaction on the other end of the conversation. By advocating for others, I learned the importance of advocating for myself and what I can do to create access for all in the spaces I take up. I have learned and am learning about my own ableism and how to tackle it better to serve my community, but more importantly how to better serve myself. I have learned about how our -- I have learned about our worth and with what we can bring to the table. I have been empowered by other disabled leaders part of the movement for change. I have met people from all walks of life, all races, sexual orientations, gender identities, classes and disabilities and with these people I have found space I don't have to feel vulnerable. I can come as my full self and it is a beautiful space to be in and I'm proud to be here.
Now I connect disabled job seekers to career opportunities. I'm privileged to be that person in the moment with them to welcome to the disability community providing them with information they are disabled for the first time. I highlight why they make for amazing employees. Living in a world not set up for us, we are creative thinkers and problem solvers. For the first person to paint disability in a positive light can change their trajectory of their outlook. What I hope has taken away from sharing my story, disability is a community and pretty badass one at that. I hope people consider it as a positive. Through acceptance of ourselves and our
peers, with we can band together and really change the game. Thank you.
>>EMILY BLUM: Thank you Brittney. Finally, Kruti. We end with a story of innovation. There's so many stories of people with disabilities hacking products and society itself to ensure our inclusion. Kruti shares a powerful story of the experience of her son's birth drove better access across an entire hospital system. Take it away, Kruti.
>>KRUTI SHAH: Thank you everyone. Thank you for being here today. Hello. My name is Kruti Shah. My pronouns are she/her. I'm a south Asian woman with dark brown hair and top with flowers and blurred background. Here we go.
December 2020, the height of my labor pain giving birth to my second baby. I was at one of the hospital systems in Chicago with my OB team that included nurses, physicians and other clinical staff. As I breathed through contractions getting stronger and painful by the minute, each interaction with my OB team was getting more nerve-wracking, can challenging and frustrating.
I had been through labor before, I knew what to expect. Why was my world falling apart this time you might ask. Being hard of hearing was not new to me. I was three years-old when I was first diagnosed with mild to moderate hearing loss. Why was it so challenging this time? It's because there were barriers. We were in an unprecedented situation of being in the pandemic for which universal masking was extremely important. Although a measure of public safety, medical masks posed a huge barrier to lip reading, especially for those with hard of hearing and deaf community. Which is why I had to strain my nerve each time someone was communicating with me. I found myself constantly saying can you please repeat that. Excuse me. Say what again? Date of birth sounded like, Pitocin sounded like -- I was missing words and was extremely confusing and embarrassing. There were times when the medical staff directly communicated with my husband, even though I was lying in front of them in the hospital bed.
To be sure, their intention was to have a quick and efficient conversation, but it still left me feeling small and ignored. I take pride in my knowledge of medicine and value my independence as a pharmacist but this situation left me feeling insignificant. Not only that, I had to deal with attitude barriers. For instance, in the post partum mother baby unit with my daughter, a nurse came close to me and said, congratulations on your daughter, I must say you are a brave woman to want to have children despite your hearing loss. She didn't realize this was not a compliment. That her statement was rooted in bias and assumption that people with hearing impairment or any kind of disability for that matter cannot be a good parent.
What was I expecting, that the medical team would remove masks or allow for lip reading? Absolutely not. Public safety is high priority for me and it is a responsibility to
keep each other safe. Would I have had clearer communication if the individual speaking was standing next to me? Yes, however, due to social distancing practices, that would have jeopardized public safety. All I wished for were clear masks so I could lip read and have communication access.
However, when I inquired about clear masks, I was told the hospital system didn't carry them, granted we were still pretty early on in the pandemic. However, it was frustrating, it was unfair, it felt as though the burden of access fell on me as a person with a disability, despite the so-called mission of our healthcare to ensure accessible and equitable care to all.
This difficult experience as a patient gave me insight into our inaccessible healthcare system. Ironically, I'm a member of the very healthcare system serving as a clinical operations pharmacist at that hospital. In my role, I solve medication related problems and provide safe and effective treatment. I participate in medical realms discussing
best options for patients. I have felt fulfilled in being an essential healthcare professional during the pandemic to provide pharmaceutical care for our very sick COVID patients in the hospital. However, I found myself struck by the same challenge of communication because of masking due to which I had to work 10 times harder than before to catch what my colleagues were saying, giving me hearing fatigue at the end of the day. I found out a huge disadvantage in chair son to hearing peers due to
Therefore I felt I was hitting rock bottom. I was feeling lonely. There were moments of darkness and despair. I was internalizing shame, guilt and self doubt. And that moment, I thought of Helen Keller, who lost her sight and hearing at a young age, yet turned her adversity to advocate for disability rights in the 1900s and she said we could never learn to be brave and patient if there were only joy in the world. It was because of this crisis that I felt the need, the commitment to channel my energy to finding a solution to make communications accessible both as a healthcare worker and as a patient. But this process was transformationle -- require revolutionary transformation on many levels.
Two major roadblocks had to be overcome. First was internal. Being vulnerable and embracing my disability. This was the toughest for me. Being raisein a culture where stigma and prejudice associated with disabilities is detrimental and the mind set was to have -- it can have a negative impact on one's confidence and dignity. I did not feel comfortable disclosing my non apparent disability. With the fear of being judged and honestly, my own internal ableism, I hid my disability. Covered my hearing aids with my long hair. I was successful in doing so, however that came with the cost of misunderstanding and lack of access to accommodation. Therefore, that mindset had to shift to recognize that disability is not a weakness, it is a strength.
Disabled individuals live in a society that is not made for them, which is why they are often trail blazers, problem solvers, hard working and resilient. The mother of disability rights said, disability only becomes a tragedy when society fails to provide the things we need to lead our lives.
The second step for this transformation was finding a community through disability employee resource group for the first time, I felt I was not alone. That there was judgment-free and safe space. It was empowering. I was in a community of powerful and influential disabled people with diverse disabilities and acquired clear masks for the hospital. I reached out to senior leadership, ADA task force, patient access team at the hospital and after getting pushback due to high costs and safety, I kept moving forward. Not taking a no for an answer, we showed resilience and our hospital finally acquired clear mask after 10 months of COVID. This was a game-changer.
Once my colleagues placed them on, I could read their lips, I could understand them. I felt included, valued, respected. Not only that, many patients and employees benefitted from them. Notably, even teachers at a daycare center that was affiliated with the healthcare system started using them when interacting with their
young children. And the head of the daycare program reported that within just one week, they noticed a difference in children's eye contact, smile and social interactions with each other. It is the beauty of universal design. Clear masked, caption, voice activated features on your phone, elevators, ramps are all designed for those with disabilities. But they benefit so many people. Not only that, but embracing my disability and advocating for those with disabilities at the hospital created a culture of
inclusion and wellness -- inclusion and wellness, every individual felt comfortable being who they were and leading with identity.
Our department was recently awarded a quality award for diversity, equity and inclusion initiatives. Personally, the last three years were very difficult. Multiple challenges
but I learned to get on my feet with the power of solidarity and disability advocacy. Back to the moment of being at the mother and baby unit with my daughter in the crib next to me. After my daughter was born, I was looking at her and admiring her soft skin and beautiful eyes and I promised her to be a parent who will normallize disability as a natural part of human existence. I promised her I will stand by her and break any barriers she may have to face going out in the world. So let's all stand together, shoulder to shoulder, let's celebrate our differences. Let's find our voices and let's lead with our disability or our identity with courage, with conviction, with compassion. And let us join Amanda Gorman, a young black poet who stood in front of the entire nation during the presidential inauguration in 2021 and said for there is light, if only we're brave enough to see it, if only we're brave enough to be it. Thank you.
>>EMILY BLUM: Thank you, we celebrate you and we celebrate everyone, you all are so deserving of a round of applause.
As I close this out, I want to thank all of you for joining us today. You have just heard four wonderful and beautiful stories, yet we know there are millions more out there and people with disabilities come from all backgrounds, races, ethnicities, genders, income levels and family histories. We encourage all of you to seek these stories out.
Because we can't help ourselves, we have a few suggestions in a follow-up e-mail, including a recently launched website by our very own Amy Johnson. And we encourage you to connect with us on Facebook, Twitter and LinkedIn and our website. If you are a person with a disability interested in leading in the Chicago region, please apply for our annual institute. Applications are open for the 2024 session and we accept applications for Membership year round. Visit disabilitylead.org for more information.
I quickly want to share with all of you, the story of the first time I met a leader with a disability and the profound impact on me. During my junior year in college after the ADA was passed, I spent a semester in Washington D.C. and participated in a program that matched classroom learning with internship. I landed an internship at
Common Cause and for the most part, everything about the work was unremarkable, get coffee, make copies type of work and honestly, I wouldn't remember any of it if it wasn't for a senior leader in the organization. This leader was a total bad ass and person with a disability and my mind was blown. It was the first time I encountered a person with a disability in a professional non medical setting. I saw her lead teams and conversations and saw her come and go for meetings leading the organization
effort's to root out special interest. We didn't speak much or interact yet at the same time, she was a mentor and role model. She embodied what I wanted to be, a woman with a disability that had power and influence.
I like to think more than 30 years later she would be glad to know where I am, a woman with a disability unapologetic, focused and determined and doing the work that has impact. I'm not alone. 33 years after the passage of the ADA, the number of people with disabilities in the workforce commanding attention for skills and ideas and making change has grown. It is exciting to think about what the next three decades will bring, disabled leaders who will help us get there and stories we'll be able to tell about it.
Thank you and have a good evening. Bye.
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