When I started this blog, my intention was far from using it as a platform for kvetching (Yiddish for complaining). Instead, its purpose was rooted in education and creating awareness about disabilities, with the ultimate goal of dismantling stereotypes and fostering a more accessible and inclusive world for individuals like myself. Today, I am compelled to share recent experiences that reinforce my commitment to advocacy but also highlight the ongoing frustration I face more often than it should be necessary.
In a recent visit to a new physician, the recurring situation of being spoken to indirectly exacerbated my annoyance at medical appointments, underscoring the continuous need for education and awareness. As is customary, the nurse came out to the waiting room to escort me to the examination room. Accompanied by my husband, a common support in such situations, I rose from my seat when my name was called, grabbed my husband's arm, and followed her to the exam room.
The nurse proceeded to address my husband, informing him that she needed to weigh me, and I should get on the scale. In response, I firmly stated, "You can speak directly to me, although what I really wanted to say was I’m blind not deaf." This scenario, unfortunately, is all too familiar to me in various forms, especially within the medical arena. It's disheartening that professionals in the healthcare sector, entrusted with the well-being of diverse patients, often lack adequate training to address the needs of those with disabilities.
Not even two weeks later, during another visit to a new doctor (yes, I am at that age where I seem to be seeing a lot more doctors), a similar incident occurred. The nurse directed my husband to inform me that I should get undressed and put on the gown, despite my presence and ability to comprehend and respond. After politely interjecting once again, "you can speak directly to me," the nurse persisted in addressing my husband instead, to which he said, "talk to her, not me." Such encounters, which again are quite frequent, leave me grappling with the challenge of maintaining composure and avoiding confrontation because I seem to always want to avoid the angry blind woman moniker, with feeling it is
my responsibility to educate even though sometimes I’m just tired of always needing to educate. Often medical appointments are stressful enough, having to deal with educating people about treating me as a competent person on top of that just adds to a stressful situation and is frankly exhausting.
In all fairness, it is crucial to note that despite these all too frequent and frustrating encounters, I have been fortunate enough not to have experienced such treatment from every healthcare professional I've encountered. In most instances, the doctors themselves have treated me with the respect and direct communication that every patient deserves. It is essential to acknowledge those professionals who understand the importance of inclusivity and respectful interaction.
However, the challenges extend beyond interpersonal communication. The frustration of dealing with forms and websites related to medical practices adds another layer of difficulty to the healthcare experience. Often, these platforms are not designed with accessibility in mind, creating barriers for individuals with disabilities. From inaccessible online forms to websites lacking proper accommodations, navigating through these systems becomes an additional source of stress.
The inaccessibility of these forms and websites not only hinders the efficiency of healthcare interactions but also reinforces the broader issue of neglecting the needs of individuals with disabilities in various aspects of life. It emphasizes the necessity for a comprehensive approach to inclusivity, encompassing both personal interactions and the technological infrastructure supporting healthcare services.
As the call for education and awareness in the medical field continues, it is equally important to address the digital aspects of healthcare accessibility. Healthcare institutions should invest in making their online platforms inclusive, ensuring that individuals with disabilities can navigate them independently and efficiently. This includes implementing features such as screen reader compatibility, accessible forms, and a user-friendly interface that caters to a diverse range of abilities.
The journey toward creating a truly inclusive healthcare environment requires addressing not only the attitudes of healthcare professionals but also the systemic challenges present in administrative processes. By fostering awareness, implementing comprehensive training programs, and prioritizing accessibility in both personal and digital interactions, we can work towards a healthcare system that truly serves the needs of every individual, regardless of their abilities.
-Michelle Friedman
Michelle Friedman is the board chair of Keshet in Chicago, a member of Disability Lead and has been a disability advocate for 40 years. She has written two children’s books and is a frequent speaker for elementary and high school-age students.