by Melody Holloway
Regarding disability update report reviews, how the Social Security Administration determines existence of disability, confirmation, and how disabled someone is, these eligibility determinations have little to do with what we experience, how we live our lives, or how we utilize benefits.
Those of you who make these determinations do not have first-hand experience with or live alongside the wide, diverse spectrum of disability and different levels of ability among those you serve.
I am a congenitally blind 40-year-old woman with additional disabilities and health conditions much more debilitating, however invisible and easily overlooked. These include significant acquired hearing damage, autism with no intellectual disability, ADHD, severe chronic post-traumatic stress with dissociation, auditory, tactile, and olfactory Charles Bonnet Syndrome, Ehlers-Danlos Syndrome, fibromyalgia, chronic fatigue, Non-24-Hour Sleep-Wake Disorder, hypoglycemia, hypotension, hyperthyroidism, tachycardia, heart arrhythmia, gastritis, irritable bowel syndrome, gastro-esophageal reflux, osteoarthritis, carpal tunnel syndrome, cubital-anti-cubital tunnel syndrome, neuropathy, dysautonomia, debilitating migraines with pressure, aura, vertigo, tinnitus, sensory-auditory processing trouble, heavy painful shoulder knots with synovial fluid collection, serious long-term effects of bacterial pneumonia, COVID, mold spores, secondhand smoke, chemical-pesticide exposure, use of prescription sleep aids, antibiotics, psychotropic medication, and electro-convulsive therapy.
I cannot hold a phone to my ears, use a headset, or endure an MRI without further hearing loss and neurological damage. I cannot hear a refrigerator running, text-to-speech output screen readers, devices, and mobile applications which provide visual interpretation, easily identify a voice, pick out where a particular sound is coming from, recognize a door knock, notice critical alerts, or hear traffic in order to safely cross streets, nor have the basic stamina to do so.
I am completely self-sufficient, managing my finances, medical needs, shopping, cleaning, cooking, scheduling rides and appointments, advocating with numerous non-profits pertinent to disability, illness, LGBTQ, plus civic, civil, and cultural rights and responsibilities, taking surveys, participating in focus groups, studies, and webinars in order to share experiences, offer ideas, and keep up with legislative progress, and am a former impromptu caregiver.
I could be perceived as not being "disabled enough." What does this mean?
If I lose my mother's minute portion of Title 2 survivor's retirement benefits, I would not be able to pay for white guidance canes, replaceable cane tips, refreshable braille displays, screen-reading software, the iPhone and computer supporting all this software, keyboards, mobile applications which provide different aspects of visual assistance such as reading print documents, product and medication labels, nutritional information, cooking instructions, recipes, instruction manuals, food expiration dates, restaurant menus, street signs, elevator, microwave, stove, laundry, and coffee pot panels, light detection, paper currency identification, environmental and facial description, GPS, indoor and outdoor map directions, object detection, reading electronic braille and audio books, emails, text messages, and verbal caller identification. I could not purchase braille paper, labeling materials, WayAround tags to electronically label household items read by a code tag identifier app, Internet and phone access in order to utilize these adaptations, remain connected to the outside world, receive emergency assistance, public safety and weather alerts, and delivery notifications. Many of my peers and confidantes use Social Security benefits to purchase service animal/guide dog supplies, food, and veterinary care.
All this in addition to household essentials, rent, utilities, transportation, renewal dues for the American Council of the Blind and other applicable organizations, accessible durable medical equipment, and now, due to the current federal government shutdown, unexpected prescription co-pays, food because nutrition assistance funding is in question, and co-occurring hospitalizations due to questionable Medicaid coverage, Medicare policy changes, and delayed emergency response.
The perception that everyone is employable at any time is false. Too many of us contend with employer perception of our skills, abilities, capabilities, prior experience, background, and education level, access to accommodations such as assistive technology and environmental layout, transportation barriers, vocational rehabilitation services if appropriate, external commitments, responsibilities, and health decline. Income stipulations on top of all this held down by supplemental benefits, Medicaid, and rent subsidy criteria mean these safety-net benefits are an essential, non-negotiable, head-above-water lifeline in many cases.
Those whom the SSA relies on to verify disability existence such as family of origin and healthcare professionals also do not use our adaptations, walk our paths, or live inside our conditions.
I only found out most of what I am surviving with later in life. Most were acquired, occurring at different times, or completely misunderstood and misdiagnosed or downplayed — ignored altogether. Information for one patient can be different for several healthcare systems. I and many others have been incorrectly charted, labeled, documented, and profiled in personal medical records over time.
Sure, anyone can claim anything; however, those of us significantly disabled are generally honest and not out to defraud anyone. We are all too aware of perception, assumption, misunderstanding, and on-the-fly bureaucratic decisions made by humans with licensure and certifications who can legally sign a paper, bill or law, or veto, forgetting about the ripple effect of that signature ubiquitously carrying forth, altering the lives of those whose hands you will never shake.