Navigating Disability Self-Disclosure and Accommodations in Academic and Job Applications and Interviews

     I recognize that the lulls in my posting have continued, and that’s just life. I have also reverted to my roots with a more traditional topic related to navigating disability in academia and related professional environments.

    Disclaimer: This piece is based on my experience and my opinions, though I have also coalesced feedback I have received from brilliant disabled mentors, colleagues, and role-models, including Drs. Kara Ayers, Emily Lund, Lauren Khazem, and others. I am not an expert, and I welcome others’ perspectives, suggestions, and ideas.  

Personal context

    My perspective on disability disclosure and requesting accommodations continues to evolve, and has been on my mind a lot lately. I have an on-site in-person job interview coming up for the first time since the pandemic began. I have done dozens of in-person interviews before, but this feels different. I have further formed my disabled and professional identities. Now I have my PhD. Now I intermittently use a white cane, which makes my disability visible.  How does this influence my choices of when to disclose or how to request accommodations?  I have also stepped into the role as a mentor and consultant for people with disabilities, directors in clinical training, and supervisors who have asked me questions about appropriate disclosure and provision of accommodations. So I want to put pen to page - aka fingers to keyboard - and share my meandering thoughts and experiences.

Disclosure can be difficult, and is a personal decision

    Disability is often misunderstood, and ableism remains rampant in academic and professional settings. This makes disclosure daunting. At the same time, disclosure and requests for accommodations are often necessary for inclusion, equity, and access.

    There is no right way or right time to disclose. Disclosure of disability is a personal decision. It can depend on comfort with disability identity, the setting and context, visibility and needs associated with that disability, and even emotional bandwidth in the moment. While there is no one size fits all approach, I want to offer considerations and strategies that may be useful to consider when navigating academic and job applications and interviews.

What can be helpful to consider before disclosing?

    As a psychologist interested in understanding behavior, I often ask the question “What is the function?” In other words, why disclose in this situation? What is is that I am hoping to get from doing so? Identifying our specific goals in a given context can help us determine what and how to disclose. 

    We are not legally required to disclose disability in a job or graduate school application. Many would say there is no need to disclose until we have an offer in hand. And while that may be true for many, for others disclosure becomes necessary to receive accommodations during the interview process. 

I also find that disclosure serves as a litmus test. I accepted a research position before attending graduate school without disclosing my disability. I applied and interviewed without the need for accommodations and without my disability being visible. After I began the position, I expressed my need for accommodations. My supervisor at the time expressed that he felt deceived and would not have offered me the position had he known I was disabled. In this case, I had been doing  the job as a volunteer prior to being hired, so I was confident I demonstrated that I was able to perform all necessary tasks and responsibilities. Nonetheless, his ableist beliefs and assumptions made me feel disrespected and under appreciated. Did I need to disclose legally? No. Would I have gained information about the level of support I would receive in this environment had I disclosed? Absolutely. 

This experience informed my decision to disclose during graduate school applications and interviews. I did not want to commit 5-7 years to an institution that would not support me and my needs. Is it possible that my choice to disclose impacted where I received offers from? Of course, though I can never know to what extent. I am nonetheless grateful that I shared candidly about my identity and my needs so that the institution where I matriculated knew what to expect when I arrived. 

In addition to identifying the function of disclosure, it can be helpful to determine how you wish to disclose. When I began disclosing my disability to therapy and assessment clients and patients, I worked with my early graduate school supervisors to practice. I was worried about the language I used, my tone, and the amount of information I was providing. I found it useful to role-play and receive feedback. I ended up deciding to disclose during informed consent to express how my low vision could impact our work, and offering to answer any questions. I have adapted my script over the years and continue to tweak based on situational factors, but to this day I find it helpful to have a standard spiel. Especially when going into an academic or job interview that may increase stress and make it hard to find preferred language, practicing can help build confidence and ease. 

Finding other supports and allies can be tremendously validating and helpful. When I was deciding when and how to disclose my disability when applying for clinical internships, I sought out advice from others who have gone through the process. Although no two situations are identical, I learned from others to identify what felt right for me. In practice, this included disclosing my disability in my diversity essay and mentioning it to the training director if I had an individual interview with them. Seeking support from others in the disability community who have experience with disclosure in similar contexts or who can share examples of how they have disclosed can help normalize disclosure and inspire the type of language that feels like a good fit. 

How much are you comfortable disclosing. Although it is not our responsibility to educate others about our disability and our experiences, often people will ask, and it is useful to identify what we are and are not comfortable disclosing. For a long time, I responded to questions about my disability by saying “I’m an open book, ask me anything.” In many situations, I still express this sentiment, however, I also no longer open the door quite so wide in every interaction because it can be exhausting to field question after question about my personal medical history, trajectory, and needs. Plus, indulging other’ curiosities often detracts from the purpose of the conversation I’m having, especially during a job or admissions interview. I have found it useful to have strategies for redirection ready. I will often start gently, “While I would love to share more, I also have some questions about opportunities for collaboration.”  And if I need to be more forceful with my boundary, I will add, “I don’t feel comfortable going into the details right now.” Remember, it is not necessary to disclose details in applications or interviews, and it is only necessary to share the relevant details when requesting accommodations. Beyond checking in with your comfort level, knowing your rights and legal protections here can also serve as a guide. 

What can be helpful to consider when requesting accommodations?

Accommodations allow for an equal playing field. Accommodations are not unfair advantages, they are ways of ensuring that people with disabilities have access to what people without disabilities do. Although disclosure and requesting accommodations often go hand in hand, often we disclose without needing specific accommodations, and other times we need specific accommodations without having previously disclosed. 

A challenge I have faced and have heard from others is whether or not requesting accommodations is really “necessary.” The idea being that if I can get by without requesting accommodations, why go through the hassle or draw unnecessary attention to myself? 

For me, requesting accommodations can ease the anxiety involved in what is often a stressful experience. Plus, applications and interviews are a lot of work, and those of us with disabilities have no obligation to put in so much more effort than our non disabled peers. For example, when I was interviewing for internship (virtually), I requested accommodations through the interview coordinator to ensure I would have equal access to interview and orientation materials. This request for accommodations ended up being mostly unnecessary in practice - I was never asked to read materials during an interview - however, I felt comforted knowing I would not be put on the spot to do something I could not. This request also ensured I received digital copies of materials presented, such as powerpoint slides orienting to the program, which meant I was not scrambling to magnify, take screenshots, and obsessively record notes during these meetings and instead could listen, write down questions, and take in information.

As valuable as accommodation requests can be for ensuring access and easing anxiety, I do not want to request accommodations that are unlikely to be needed or utilized. The timing of accommodation requests can therefore be very important. For example, I am currently awaiting my schedule for my upcoming on-site interview. I have not yet requested accommodations. If it is clear that my schedule has plenty of built-in time for me to navigate from place to place, I won’t need to ask for assistance of extra time. If I discover that I am expected to navigate complex routes or longer distances independently, then I will ask for accommodations. I decided on this approach after consulting with mentors and colleagues. While those of us with disabilities are often planning ten steps ahead to ensure our needs are met, sometimes it can be more effective to wait and see whether we will need to ask for help before we preemptively do so. And sometimes, we won’t need to request formal accommodations but can simply ask for assistance in the moment as is needed. Again, there is no “right” approach, and of course what each of us decides will vary. 

We know what we need better than anyone else. And so it can be tremendously helpful to intentionally brainstorm the specific asks that we have. Most people won’t know how to accommodate our disability, so we need to know the specific needs we have to articulate them to others. Instead of “I’ll need help seeing,” I will specify, “I can’t see standard print or signs and will need verbal descriptions to navigate physical spaces and digital copies of any print materials.” Thinking through what is likely to be asked of us during interviews and what we may need accommodated can help us with identifying our specific asks, and often we can benefit from checking in with others who have been through this process to get a better sense of what all is involved. 

Of course, there are many other considerations that go into requesting and obtaining accommodations for our positions. I could (and might in the future) write an entire separate piece on how to figure out where to turn for these requests, how to assert our needs, where to find advocates and supports, and more. However, for the purposes of this piece, I want to keep the conversation constrained to academic and job applications and interviews.

The Key Takeaways

A number of factors go into deciding when and how to disclose as well as when and how to request accommodations during the academic or job application process. Important considerations include our comfort, needs, and safety. If you are trying to decide what decision is right for you, I highly encourage discussing with others, reflecting on the function of your disclosure, and weighing the pros and cons of the options under consideration. We are also always allowed to change our minds, and we can update our plans if we pick up on a vibe that pushes us in one direction or another. 

Disability-Affirmative Mental Healthcare Improves Care for All

    I have decided to offer brief disclaimers and updates at the start of my posts. For today, I want to acknowledge that writing these pieces has not been as high a priority as I expected it would when I wrote my last “come back” piece. During the week, I have been focused on transitioning to my new post-doc position and at the end of the day, I often need a break from screen time to rest my eyes and recharge. On the weekends, I have prioritized PNW adventures with my partner and pups. And while I could carve out more blogging time, I am also trying to unlearn patterns of productivity. Plus I believe that choosing to surrender and ease up on pressuring myself into what does not serve me is a form of disability justice, which is my ultimate aim in writing this blog anyway. I am listening to my body and what it needs, so these posts will come out as they do when they do. Read on for a post that I’m really excited to share that articulates my passion for disability-affirmative mental healthcare and why I think this approach benefits everyone. Note though that I could - and maybe one day will try to - write an entire book on this topic, so this is an abridged version that will likely have offshoots that are expanded on in future posts. As always, your thoughts and feedback are welcome.

Inspired by my personal experience, advocacy, and professional training, I have been developing my interest and expertise in providing disability-affirmative mental healthcare. My post-doctoral fellowship in rehabilitation medicine focuses on mental health treatment to improve the lives of people with disabilities. This past year, I had the privilege to present to a couple of groups at the University of Washington on the topic and am slotted to share more at upcoming talks at UC Berkeley and Rice. But what does it mean to be disability-affirmative? How does this appear in mental health care and our relationships more broadly? And why do I believe we should all care? 

Let’s start by talking about what it means to be disability-affirmative. Any identity-affirming practice involves explicitly and humbly discussing that identity, in this case, disability, and the impact that identity has on a person’s life. The World Health Organization describes that disability results from the interaction between individuals with a health condition, such as cerebral palsy, Down syndrome, and depression, with personal and environmental factors including negative attitudes, inaccessible transportation, and public buildings, and limited social support. Described a bit more succinctly by the Center for Disease Control, “a disability is any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).” Therefore, interactions affirming disabled identities involve nonjudgmentally discussing activity and participation barriers. Disability affirmation also involves the identification of the gifts or strengths that come with disabilities. Rather than seeing disabilities as deficits, disability-affirmative approaches see disabilities as differences that come with unique strengths, capacities, and ways of interacting with the world. 

Let’s unpack these disability definitions a bit more to get a sense of what it means to affirm a disabled identity. Disability is the one identity that people can acquire at any point in their lives. This truth led disability activists to coin the term “temporarily able-bodied” to describe those who are experiencing a period without disability. This phrasing acknowledges that if we live long enough, most of us will be disabled at some point in our lives, and whether it comes sooner or later depends on our circumstances. That being said, unique experiences associated with being congenitally, severely, and/or chronically disabled differ from brief periods of illness or injury. And many with disabilities are not experiencing illness or injury. I reflect back on a few times that others have said to me that they “understand” my experience of blindness because they have had brief periods of being unable to use a limb due toot injury.  Well-intentioned, these comments highlight the difference between temporarily experiencing disability and identifying as disabled.  While a broken limb may increase awareness around inaccessibility and require temporary use of assistive technology and tools, those with a brief period of disability will often not experience the stigma and isolation associated with being disabled in an able-bodied designed world. Disability remains an aspect of diversity due to the unique identity experiences of the disabled community, all the while the benefits of access and inclusion for people with disabilities also span those with temporary illness or injuries, using strollers or carts, and so much more. So when I advocate for disability-affirmative practices, I refer to practices that support people with disabilities by reducing structural barriers like inaccessible spaces, tools, materials, and more,  as well as reducing the attitudinal barriers faced by people with disabilities due to ableism.

With those definitions in mind, I will spare you the hour-long PowerPoint slide deck and cut to the key broad practices I believe undergird disability-affirmative mental health care regardless of treatment approach or modality, though I think these are also good practices for any and all relationships. Since this is the cliff notes version, please come to my talks or reach out for resources - such as this piece on three things clinicians should know [link] - to learn more. These practices align with good clinical care tenants, including cultural humility and competence, respectful and dignified person-centered care, and strengths-based practice. 

We cannot tell from someone’s outward appearance what their identities are, including their disabilities or needs. Disability-affirmative providers do not make assumptions about needs and ask explicitly how to best meet individual needs. Humility and collaborative problem-solving can go a long way in identifying where and how someone could use accommodation and support. Whenever feasible, do what it takes to flexibly accommodate care to meet the needs of the person being served. And check in to identify whether the accommodations are sufficient and helpful or if there are other steps that could be taken to best serve the needs of whoever you are working with. It can be infantilizing and infuriating for others to assume someone’s needs - for example, I hate when people grab my arm to physically guide me when I am using a white cane without asking first. Would you like to be grabbed by someone unexpectedly? Disability-affirmative care respects the autonomy of the individual, upholds the dignity of all people regardless of disability type or status, and provides space to empower the individual to assert their needs. Disability-affirmative providers also acknowledge the longstanding role of the medical system in oppressing people with disabilities - *cough* eugenics *cough* - and address the ways in which ableism in medicine may make it difficult for a person to share their experiences or needs in this environment.  

Especially important in the realm of mental health treatment, disability-affirmative practices include a discussion of how to harness strengths to improve well-being. As an example, I worked with a neurodivergent patient last year who originally only saw their disability in a negative light. They identified the way their disability slowed them down, impaired their ability to connect with others, and contributed to their anxiety and depression. Early in treatment, I asked whether they would be interested in learning about the data indicating strengths associated with being neurodivergent. After seeing examples, they were able to identify their own “neurodivergent superpowers” - strengths and talents  - that helped them accept this aspect of their identity and develop pride and confidence in this identity.  All the while we held space for the ways their neurodivergent experiences have been extremely painful, explicitly labeling the oppression imposed by ableism.  

On the surface, many struggles to identify strengths associated with disabilities like chronic pain or persistent mental health challenges; providers may also hesitate to “glorify” these challenges when the goal of treatment is to reduce the impairment caused by symptoms and improve quality of life. To me, these challenges to a strengths-based approach are another manifestation of ableism.  I believe that regardless of the form of disability -  including mental health-related disabilities - it is healing to forge meaning and self-worth and identify disability-related strengths - emotional sensitivity, flexibility, resilience, creativity, compassion, or conscientiousness to name a few - because identifying strengths enhances mental health and helps change the relationship to one’s disabled identity. Identification of strengths does not deny the suffering caused by disability - these functional limitations, structural barriers, and pervasive ableism are often devastating. This strengths-based approach nonetheless offers balance and a middle path that acknowledges and accepts the pain while striving for change. Plus, ample research now suggests that a stronger disability identity relates to improved mental health outcomes (as an example, here is work I published with the illustrious Dr. Mercedes Zapata). 

At the risk of redundancy, I want to reiterate why I believe these disability-affirmative mental healthcare practices offer a framework that can improve health care for everyone. We all have bodies and minds. All of our bodies and minds are diverse and changing. We are always adapting to our changing needs, whether it’s sickness or injury or a congenital or acquired disability. The pursuit of medical treatment inherently indicates that there is a medical need, which often presents as an illness or injury that may or may not lead to disability. We all deserve high-quality, respectful healthcare. So, when I advocate for specific disability affirmative mental healthcare practices, I am advocating for practices to improve healthcare practices for all. 

Related things I’ve been enjoying:

• I recently discovered the Docs with Disabilities podcast with Drs. Lisa Meeks and Peter Poullos, as well as diverse guests, and I have been rapidly consuming all the episodes!!! Highly recommend it to any healthcare providers (not just medical doctors) who want to learn more about the experience of disabled providers [Apple podcast link]
• This NYTimes Adapt-Ability video, “I’m going blind. This is what I want you to see” [Link]. I found this personally relatable and (pardon the pun) eye-opening 
• Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha is a compilation of essays that sheds light on disability politics, psychology, intersectionality, social justice, advocacy, and more. There is so much to learn from this one!
• Since I wrote about neurodiverse experiences here I think it’s worth featuring this compelling memoir I recently read entitled, The Electricity of Every Living Thing: One Woman's Walk with Asperger's
• A new hysterical mental health memoir by the wonderfully talented Jenny Lawson entitled, Broken [Link]. I have only just started this one but all of what I have read by her has been fantastic! 
• This piece about "Hacking an Ableist World" by Laura Mauldin highlights how disabled people creatively find ways to live life that goes mostly unseen [Link]

Announcing My Comeback

    It’s been a while. Between the pandemic, my final years of graduate school at Berkeley and finishing my dissertation, moving to Seattle, completing my 12-month pre-doctoral clinical internship, all the social and political unrest of the last 2.5 years, and family health challenges and stressors, I have not had the energy to write this blog. I have had many ideas and moments where I felt the urge to put words on the page, but I was also so, so tired. With the completion of my PhD, the reluctant acceptance that the pandemic isn’t going anywhere and that the world will continue to be relentlessly chaotic, I am coming back with renewed momentum and direction.

    After a much-needed break and vacation, I plan to resume regular programming with twice-monthly posts about ableism, now extending beyond academia to medical settings. My full-time clinical internship across hospitals and clinics has inspired me to prioritize pieces about ableism in medicine, especially in mental healthcare. The more medical environments I have had the privilege to work in, the more I have encountered structural and attitudinal barriers to effective training and care. I have desperately sought stories, examples, and mentorship for how to cope with these encounters and challenge these systems, and will feature some of my favorite recommendations, readings, and resources. I yearn for more voices in this space, and so I will also offer my stories and experiences to shed light on how pernicious, pervasive, and pesky ableism in medicine can be.

    I intend to write more pieces that are both clinically and personally focused. I will offer explanations of the skills from therapy that help me and my patients navigate disability-related experiences. I will share about finding meaning and forging identity while being in a disabled or sick body. My professional interests have been evolving and I have been finding joy through cultivating my passion for providing disability-affirmative mental health care. I have observed so much utility in applying evidence-based strategies from empirically-supported interventions for mental health to disabled communities and for dealing with complex medical needs. The skills for balancing acceptance and change, regulating emotions, tolerating distress, and effective interpersonal communication and relationships are well-suited for many of the common disability-related experiences (well, and for all experiences being in an ever-changing body, let’s be honest). The strategies and insights from my clinical practice and my experience as a patient in therapy have been instrumental to my coping with and fighting against ableism (and other systems of oppression), and I aim to include practical and intimate examples in this blog as well. Ultimately, I hope I can highlight some of the learning and growth that I have observed personally and professionally that inspires me to do this work, all the while acknowledging that I am humbly on this journey too. 

     For now, I am going to continue resting and recharging by veraciously listening to books, exploring the Pacific Northwest on meandering dog walks and hikes, connecting with loved ones, and crafting. Stay tuned for more musings on ableism in medicine, the therapy strategies I have found helpful in navigating disability-related experiences, and stories about meaning and disability identity beginning in August.

 

Until then, here’s a sample of what I’m reading related to disability justice and medicine: 

• Being Seen: One Deafblind Woman's Fight to End Ableism by Elsa Sjunneson. This book is equal parts memoir and popular science and speaks to the misrepresentation of disability in media. To quote Goodreads, “As a deafblind woman with partial vision in one eye and bilateral hearing aids, Elsa Sjunneson lives at the crossroads of blindness and sight, hearing and deafness—much to the confusion of the world around her.” 
• Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judy Heumann. This is the personal story of one of the most influential disability rights activists in US history who was instrumental in efforts ranging from the Section 504 sit-ins in San Francisco to the creation of the Americans with Disabilities Act. I’ve only just started listening to this one, and I have a feeling I’m going to devour it!!!
• Waist-High in the World: A Life Among the Nondisabled by Nancy Mairs. This is an intimate memoir about living with MS and advocating for disability justice 
• Ten Steps to Nanette by Hannah Gatsby. This hysterical memoir by an award-winning comedian and queer woman diagnosed with autism and ADHD late in life is all about truth-telling.
• Between Two Kingdoms: A Memoir of a Life Interrupted by Suleika Jaouad. This deeply moving and personal memoir details Suleika’s experiences with cancer from diagnosis to remission and recovery. She also writes a wonderful newsletter you can subscribe to that offers narratives of her ongoing cancer journey and reflective journal prompts. 
• The Cult of Smart: How Our Broken Education System Perpetuates Social Injustice by Fredrick DeBoer. While this book isn’t advertised as a work of disability justice, the exposure of stigma and discrimination based on intellectual ability highlights the rampant ableism in education and society at large. On the same theme, I also really loved The Genetic Lottery: Why DNA Matters for Social Equality by Kathryn Paige Harden, which asks provoking questions about what equality means in a world where we are all born inherently different. 
• Essential Labor: Mothering as Social Change by Angela Garbes, Again, this isn’t advertised as a work of disability justice, but by highlighting the state of caregiving and the capitalistic pressures that reward productivity above all else, Garbes’ work beautifully speaks to some of the challenges of being in a body and needing and giving care.

What is ableism, anyway?

 In the last few years, I have started conducting “me-search.” I have had the privilege to collaborate with friends, colleagues, mentors, and role-models on projects broadly related to barriers faced by people with disabilities. As part of my “me-search,” I recently read a paper about a new self-report measure of symbolic ableism adapted from a measure on racism. 

Reading Drs. Friedman’s and Awsumb’s article about measuring symbolic ableism got me thinking deeply about the construct of ableism in relation to my lived experience. Before I share more, I want to acknowledge that many of these ideas are not my own, and have been shared by others, including these wonderful researchers in their piece. I am using their operationalization of ableism as a framework, and I have expanded on their constructs based on my observations, learning from others with disabilities, and growth in therapy.

The authors explore how opposition to disability rights seldom has been marked by overt displays of bigotry or hostility but instead is marked by outward warmth and support rooted in pity and paternalism. One of the sub-scales of the adapted ableism measure is called “Recognition of Continuing Discrimination." Whereas, in the original measure about race, this sub-scale was “denial of continuing racial discrimination.” Ableism is so pervasive and insidious that most are not even aware of its existence, let alone deny its presence. 

So what is this subtle form of oppression referred to as ableism? According to this scale, symbolic ableism involves individualism, a failure to recognize continued discrimination, lack of empathy, and believing people with disabilities make excessive demands. Let us unpack these components of ableism and look at some examples. 

Individualism

Ableism is upholding the rigid individualism that suggests everyone can and should be able to pull themselves up from their bootstraps on their own and without support. Ableism is believing success is only dependent on hard work. Ableism is believing people with disabilities are not at any form of systematic disadvantage; we live in a just world and people get what they deserve. If you fail, that is your problem. 

But, people cannot simply achieve no matter what happens to their bodies and minds. Although some illnesses can be cured, many people cannot simply overcome their disability. I will never have sight. And no matter how hard I try, I will never be able to do visual tasks. Individualism would say this is my weakness and my fault. Individualism would suggest that any failure is my doing. For a long while, I believed that narrative. I thought it was my responsibility to work twice as hard to compete. If I could not do something, it was because I did not try hard enough. Over time, though, I have come to accept I am a blind person in a predominately sighted world. I will always be at systematic disadvantages. No matter how hard I pull up on my bootstraps, I will not be able to lift myself out of this body. More radical still, I would not want to lift myself from this body. Our ableist society may say there is something wrong with me, but I choose to appreciate all my body gives me.

Recognition of Continuing Discrimination 

As is true across the “isms,” ableism involves gaslighting. People with disabilities are told they complain too much and their inability to get ahead is due to their faults. Ableism is the lack of recognition of systemic inequality for people with disabilities.  

Ableism often involves outward warmth, support, and appreciation. Most would say they would never want to disadvantage someone who is in a wheelchair. At the same time, that same person may leave a rental scooter in the middle of the sidewalk or take advantage of a friend’s handicap placard without seeing the contradiction. I have often been told, “just let me know and I will do whatever I can to help,” to then be told that my requests for accommodations are too inconvenient, burdensome, or difficult to provide. People believe they care deeply for people with disabilities while also failing to comprehend how their actions contribute to continued discrimination for people with disabilities.

Empathy for Disabled People

Ableism is believing that people with disabilities are incompetent and in need of assistance. Ableism is believing that the able-bodied know what people with disabilities want and need.  Ableism is associated with pity and paternalism. Ableism sends the message that people with disabilities are victims whose lives are inherently tragic. 

“You’re blind? But you’re so young! I’m so sorry!” “If I were you, I could not even get out of bed in the morning let alone do what you do.” Veiled in sympathy and flattery, these remarks lack empathy for the experience of what it means to be someone with a disability. I am living my life the best I can, just like everyone else. Some days it is easier to get out of bed than other days. Very rarely is that due to my disability.

In general, the disadvantages due to disability are often exaggerated. The suffering caused by ableism is under-recognized, but in my experience, the daily suffering caused by disability is overestimated and misunderstood. My struggles are not because I cannot see; my struggles are because systems are designed for people who can see and often people are reluctant to accommodate to include my means of interacting with the world. 

Excessive Demands

Ableism also takes the form of thinking people with disabilities are asking for too much and a drain of the system. People with disabilities are taking advantage of testing accommodations to get ahead. People with disabilities are exercising an unfair advantage by having extended time on classroom assignments. Receiving disability benefits from the government is a waste of tax dollars and enables people to be lazy and not work. 

Although the examples above demonstrate more flagrant forms of ableism, I am often subtly blamed for making excessive demands for accommodations. It is too much to send a digital copy of a paper handout before a meeting begins. It is too inconvenient to use the software that works with my accessibility tools. It is unreasonable to require a PDF to be accessible by a screenreader. Believing people with disabilities are making excessive demands is ableist. 

I am still wrapping my mind around the contradictions of ableism: people with disabilities need to work harder and also are pitiful and tragic; being disabled seems insurmountable, and if a person with a disability cannot overcome that is their fault; people with disabilities deserve support and also make excessive demands and drain resources. Ableism is comprised of seemingly paradoxical beliefs, and all of them oppress people with disabilities. Despite being painful at times, I am profoundly grateful to have the opportunity to contemplate the complexity of ableism in “me-search” alongside my personal journey. 

We All Feel Alone Sometimes

     Growing up, I was taught that feelings like sadness, disconnection, and isolation were dark, scary, and not to be discussed. When I expressed discomfort, I was showered with toxic positivity: “it could be worse,” “it will all work out,” and “everything happens for a reason.” Here’s the thing - we all feel sad, disconnected, and isolated sometimes - and with current needs to social distance, these feelings may be more present now than ever. Plus, as an affective scientist and therapist, I feel the need to add that these emotions provide important information about our motivations, relationships, preferences, and values. Experiencing loneliness does not mean that I do not live a fulfilling, joyful, and worthwhile life. Instead, embracing the loneliness I feel as a person with a rare disability has cultivated connection. 

    When I was diagnosed with Stargardt’s at age 17, no one I knew had ever heard of the condition. Until my mid-twenties, I had very limited connections with the disability community or people who had experienced vision loss. The lack of connection to others with similar experiences meant my process grieving, adapting, and accommodating my changing needs was a private one. Sure, I would share with my sighted family and friends which pieces of assistive technology excited me, but I didn’t have anyone to talk to about feeling left out, experiencing microaggressions, or encountering structural ableism. 

    Around the time I started graduate school, I began partnering with local nonprofits and discovered resources like Facebook groups, blogs, and youtube channels that offered information and a venue for connecting with others. I began educating myself in disability studies and the history of ableism. I read books, essays, and poetry, including works by a professor with Stargardt’s at Berkeley. At age 27, ten years after my diagnosis, I met someone with the same diagnosis for the first time. Since then, my brother has presented with the same condition, and I have become friends with a fellow Berkeley graduate student also with Stargardt’s. These personal relationships, alongside self-exploration in therapy and through this blog, have helped me understand the features of rare disability that can be so isolating.

    Feelings of disconnection result from a sense of being different, misunderstood, and not belonging. Having a rare disability means that I am regularly the only one in a given setting who needs accommodations or special assistance. I spent years wondering “why me?” and "how will anyone understand?" That anger and resentment masked my grief and prompted greater isolation. When I instead moved towards fully accepting my loneliness, I came to also recognize my need for connection with others, especially around shared vulnerability. I felt like I didn’t belong, the way others feel they don’t belong, and if we all feel that way, doesn’t that mean we all belong? I have discovered that the best inoculation to my feelings of loneliness is to own my story and connect with others to honor and appreciate what is beautiful and unique in the diversity of lived experience. 

    I have also learned how and why connecting with others does not mean continuing to promote toxic positivity. When someone insists, “it will all be totally fine,” they are suggesting that there isn’t really a problem and we shouldn't be stressed, which communicates that it isn’t valid to feel the way we’re feeling. Emphasizing “everything happens for a reason” in the context of tragedies like COVID-19, racial injustice, illness and disability, poverty and homelessness, and more is hurtful to those of us in the midst of those hardships. Hardships do not always happen for a reason, and being upset in these situations is justified. These attempts at "looking on the bright side" exacerbate feelings of disconnection and add insult to injury by shaming someone for their feelings. Although unintentional, the focus on the positive shuts down the conversation.

    I hope to normalize and hold space for the feeling of loneliness, especially for those of us with rare, stigmatized, or marginalized experiences. It’s okay to not feel okay. And it makes perfect sense that we feel isolated and disconnected at times. This does not mean we forever wallow in isolation. We can learn from our sadness and loneliness to make the most out of our situations. The only way we can really do that though is by accepting our circumstances, good and bad. I accept that my life with a rare disability will be lonely, and this loneliness does not prevent me from living a meaningful life. Instead, it is the acceptance of my loneliness that motivates me to share my story, connect with others, and advocate for and empower vulnerable and underrepresented populations. 

Myths About Blindness

Amidst the current resurgence of the Black Lives Matter movement, I have come across admirable efforts to educate. I have appreciated the black creators of literature, podcasts, music, and memoirs for helping me better understand racism. I have benefitted tremendously by the willingness of people of color to share their experience to inform white people like myself who have not experienced racial oppression.  I write this not to dilute or distract from the potency of racism in the United States, but instead because I wish to share in efforts to elucidate realities about marginalized experiences. Before my vision deteriorated, I admittedly had no concept for blindness.  My lived experience and connection to members of the blind community have given me a more nuanced perspective, and I hope to share this information to help answer questions or clarify misconceptions about blindness.

Myth: Blind people see all black.

Fact: Blindness is a spectrum, and many blind people have some functional vision. On one end of the blindness spectrum is seeing absolutely nothing. Though I haven't had this experience, I have heard that for most, the experience is not seeing all black, but instead is an absence of sight. Have you eaten something with your nose clogged - and not kind of clogged,  but completely totally clogged? If so, you have likely experienced being unable to taste. You could not describe the flavor because there is an absence of information. That lack of input is what blindness is like. There simply is no visual information. On the other end of the blindness spectrum is the threshold of legal blindness. A visual acuity worse than 20/200 with correction (glasses or contact lenses) constitutes legal blindness. This means that even with correction, the legally blind person sees from 20 feet away what a typically-sighted person can see from 200 feet. Although everyone’s visual experience is a little different, for me, when I saw 20/200, I could recognize people around 15 feet away and read print using enlarged text (e.g. 24 pt font). Complete lack of sight is rare; most blind people perceive some light and shapes.

Myth: Blindness is stable.

Fact: Many forms of blindness lead to differences from day to day and over the course of weeks and years. Blindness varies between people and within people over time. I experience fluctuations I affectionally referred to as “bad vision days.” My cause of vision loss is degenerative, which means it continues to change over time. Even within a day, my degree of functional vision changes dramatically. I hear this facet of blindness is hard for sighted people to understand sometimes. I like to describe it as more intense experiences of typical visual fluctuations. For example, most sighted people will have a difficult time seeing upon walking into a dark room after being outside in the sun. Most sighted people will experience eyestrain after using a laptop for long hours. For me, these visual changes are far more exaggerated and longer-lasting, and generalizes to other visual experiences like glare. 

Myth: Blind people like to feel faces.

Fact: I have never met or heard of a blind person wanting to feel others’ faces. That is all.

Myth: When someone loses sight, their other senses get stronger.

Fact: When someone loses sight, they may learn ways to rely on other senses more, and reliance on other senses can lead to changes in the brain. My senses of hearing, taste, smell, and touch work the same way they did before I lost my sight. I have, however, learned to use other senses in lieu of vision. To illustrate, I use my sense of touch to determine whether a surface is clean. Using my sense of touch instead of vision does not inherently mean my sense of touch is stronger. Over time though, I have spent years relying on non-visual senses and I have now trained myself to use these senses. For instance, I have learned to listen to books and podcasts at increasing speeds, often four to five times the average listening speed. Though I have no way of confirming, I imagine this has changed my brain's wiring. 

Myth: You can tell if someone is blind.

Fact: You usually cannot tell someone is blind. Though some people use assistive tools like white canes and guide dogs, many blind people do not. A Google search indicates that only 2-8% of blind people use white canes and 5% use guide dogs. The vast majority of blind people, like myself, often navigate without a visible form of mobility assistance. It is also a myth that you can tell someone is blind by looking at their eyes. While some blind people have forms of vision loss that influence their eye movements and focus, many blind people can and will direct their gaze to where they are focusing even with very low functional vision. I have been told I appear to make eye contact most of the time, despite the reality that when I look at someone they disappear into my blindspot.

Myth: Blind people wear dark sunglasses all the time.

Fact: Some blind people wear sunglasses or tinted lenses, some do not, and others’ use varies. Because there are diverse causes of vision loss and diverse experiences of vision, some people benefit from tinted lenses. Personally, I have learned that blue light blocking glasses are really helpful for reducing eye strain. I also wear dark sunglasses outdoors and benefit from green-tinted lenses when it is cloudy. I am especially sensitive to glare and will wear sunglasses inside if the sun is shining in, otherwise I usually only wear blue-light blocking lenses indoors. Lenses come in diverse shades - amber, green, yellow - and it can be helpful to work with a low vision specialist to try out the various options.

Myth: Blind people don’t care about appearance.

Fact: Many blind people care about appearances; there are diverse preferences just as there are with sighted people. Blind people can and do care to create an aesthetic in their style and in their physical spaces. How? Many blind people have had some sight and may have visual preferences. Many also rely on sighted people for assistance. My friends and family know my preferences, often better than I do, and help me identify items that express who I am. Again, blind people come in all varieties - some like doing their make-up, some like decorating their homes, some take immense pleasure in fashion. 

A key thread across many of these myths pervades across culture and identity, there is diversity in lived experiences, preferences, and expressions. Some blind people are obsessed with interior design. Some blind people use a cane. Some blind people wear tinted glasses. Not all blind people cannot see anything. And frankly, no blind people go around touching people's faces. A step towards mitigating bias and discrimination is creating empathy through understanding. Did this answer questions you had about blindness? Would you like to learn more? If there are other myths you’re curious about, please feel free to leave a comment or email. Admittedly, I find the longer I’m blind, the less I recall my preconceptions of blindness, and I may be missing key assumptions!

Black Lives Matter

Our country has failed to take action to protect American lives yet again. The global pandemic has disproportionately impacted black and brown communities, and as the country begins reopening, we have witnessed even more truly horrific and senseless murders and violence against black lives. Like many, I feel small and incapable of change. I have hesitated to write this, or post on social media, feeling overwhelmed by the enormity of the systemic injustices contributing to these issues. I have questioned, who am I to say something? What would saying something do anyway? It is the longstanding silence and inaction that lets this continue. Even though it is difficult,  I have to use my voice and my privilege. This blog may not be the ideal forum, but I have to say something somewhere.

As I walked my dog after the Oakland curfew last night, I felt terror about the police and violence around me. I very quickly checked my privilege – I am a young white woman walking a white fluffy dog. I am not going to be a target. My heart broke upon the repeated realization that black and brown people are targets in ways I never have to feel, and it is a sign of my extraordinary privilege that I only fleetingly feel fear of the police. Especially after seeing the video of the woman in Central Park who weaponized race to target an innocent black man, I recognize inherently that I am part of the problem. My ancestors created this system. I am committed to doing the work to be part of reconciliation and progress.

I feel sadness, anger, grief, guilt, and outrage. I’m tired and overwhelmed and emotionally drained. I also recognize that my privilege shields me from so much of the pain and suffering black and brown communities feel, where there is more hurt, more desperation, more exhaustion. I see how devastating it is for our president to value things over lives; how hurtful it is for the media to criticize methods of protest; how scary it is not to be protected by the police; but instead to be targeted. I can only imagine the hurt that I do not see, that my privilege continues to protect me from.

Although I couldn’t possibly write this without briefly gesturing to the pervasive and chronic suffering people of color experience, I know that it is not my place to claim others’ pain. Instead, I hope to listen and learn, as well as share my perspective of identifying and claiming my white privilege. I can do better; I can be better.

How?

First, I’m listening to black and brown voices and learning to check my biases and assumptions. Because it is not the responsibility of my black friends and colleagues to educate me, I’m reading books, listening to podcasts, and watching documentaries. I’m humbly and nondefensively welcoming ideas on how I can become more self-aware and improve. I’m informing myself on how to best be an ally and an advocate. Some books that I have appreciated include:

• Between the World and Me
• White Fragility: Why It’s So Hard for White People to Talk about Racism
• So you want to talk about race
• The Inner Work of Racial Justice: Healing Ourselves and Transforming Our Communities Through Mindfulness

Part of listening and learning means holding up nuance. This means appreciating that my truth is not the only truth. This means celebrating progress made and simultaneously shouting that it isn’t good enough. This means condemning police brutality and demanding police accountability while promoting positive examples of community policing. This means sharing diverse and complex stories of people of color, stories of suffering, and of thriving and of frivolity.

Second, I’m taking action to support. As a white person, I’ve found it helpful to pull from resources like these to identify actions like supporting black-owned businesses, boycotting companies notorious for exploiting prison labor, and increasing representation of diverse voices. I’m just getting started and am on the lookout for more ways to get involved, and wanted to share some of these resources for those interested:

• Anti-Racism Resource Guide
• #blacklivesmatter resources
• Anti-Racism Resources
• 75 Things White People Can Do
• How You Can Be An Ally to the Black Lives Matter Movement

Third, I’m giving what I can. As a graduate student, I can’t offer a lot financially, but there are so many organizations doing excellent work that could use additional support. Here are just a few: #blacklivesmatter,  National Council for Incarcerated and Formerly Incarcerated Women and Girls, NAACP, Southern Poverty Law Center, United Negro College Fund, Black Youth Project 100, Color of Change, The Sentencing Project, Families against Mandatory Minimums, A New Way of Life, and Dream Defenders.

And finally, I’m using my voice. Although I’m listening and learning first, I also want to use my privilege to call attention to what is happening and amplify black and brown voices.  I can use my voice to advocate for change. I also hope to model speaking out, doing the work, and learning from my mistakes. To the black and brown communities who have suffered so greatly, the least I can do is speak up and say I see you, your life matters, and I am with you.