I’ve heard some say disability benefits are unnecessary hand-outs for people who should just die off, and why should hard-working people foot the bill for people who are lazy, whose lives mean nothing?
The disability process itself mirrors these same sentiments – the 3-5 years (on average) process for applying, fighting for, and receiving disability (SSI or SSDI) in the USA is by nature a grueling process, with analysts hired to deny applicants not once, but twice (standard procedure), forcing the applicant to appeal their case twice over several months before a hearing is granted, which then takes years to schedule due to a shortage of judges. It is a process intended to force people to give up.
You usually have to be literally dying to be automatically granted disability in the USA. And yet 10,000 people still die each year just waiting for a decision.
Disability benefits are actually a paycheck for so many people whose lives revolve around the more-than-full-time job of, well, survival against all odds: navigating access to doctors and treatments on top of physically getting through each day, and finding a way to achieve an acceptable quality of life.
It’s difficult to understand unless you take the time to learn how hard people with disabilities work.
You usually have to be literally dying to be automatically granted disability in the USA.
On top of managing their own healthcare and lives, many people who receive disability benefits are working to reduce the number of people who will need disability in the future by influencing research, treatments and even cures.
Here are some contributions disabled people make daily (individualized):
- A person who shares their story on behalf of millions of others with their condition makes a substantial difference in people’s lives who feel profoundly alone and unheard, whether through legislative advocacy, fundraising, community events, or with doctor groups.
- A patient who spends 20-40+ hours per week doing health related activities (doctor appointments, picking up/sorting/administering medications & treatments, movement/physical therapy/exercise, disputing claims/denials & handling bills, contacting pharmacies and insurance companies) is educating their providers, insurance representatives, and even elected representatives that patients are real, complex, and diverse, and rely on well-researched care and quality access to providers and treatment.
- A person who draws their blood daily for research to find what causes their rare disease, even though they are on the brink of death and cannot afford to lose more blood, is literally putting their life on the line so that future lives will be saved.
- A patient who leads a support group for people with unheard-of or severe chronic disease is a mentor for both veteran and newly-diagnosed patients who have never met anyone with their condition and who need someone to hold their hand. Patient-led support groups are vital where professionals are not able to connect with the patient experience in the same way.
- A person who begins a blog about their journey with disability or disease becomes an automatic educational and emotional resource – and mentor. A story on paper becomes an archive of experiences that others can learn from or relate to indefinitely.
- A person whose life will always be centered around a narrative of invisible pain, disease progression, healthcare, mobility device usage (or not), will always be a spokesperson for their disease or condition without ever asking for it. They know how to ask questions, dig deep, educate their friends and family, and see right through fake promises or cures from years of practice – and they can’t ever quit this work. Without collective knowledge from millions of patients pooling their self-advocacy together, each newly diagnosed patient for any disease or condition would have to rewrite the handbook.
- A person who uses all their energy to survive just one more day is fighting with all they have. They know what it means to dig deep and find answers when it seems there are none, and handle pain where nondisabled person couldn’t. We can all learn from this resolve to survive.
Professional patients do not get paid, but their work is still work, with no time off. Believe me, if there were paid positions for disabled people doing a kick-ass job of surviving and taking care of themselves, they would have already applied en masse.
For people who struggle every day to get out of bed (or not), manage their health, share an educational post online, and keep a roof over their heads; their most important job is life or death, not paycheck vs poverty. However, many patients in these situations are fighting both for their life and struggling financially. They exist in a life or death and “paycheck” vs poverty continuum (P.S. disabled folks are twice as likely to live in poverty as nondisabled folks).
If disability benefits could be seen as a paycheck for people who do not fit the current definition of work, whose unchosen work is vitally important to future generations, where could that lead us?
If we recognized, through faster and more generous disability approvals, that broken bodies and minds are also capable bodies and minds that do unattractive essential work that helps glue society together (ie we need both garbage workers and presidents), where could that lead us?
If the goals are to reduce stigma, deaths (including by suicide), and improve the quality of life for disabled people as well as the lives of their caretakers, doctors, communities, and the world, where could *living wages for the disabled lead us? *folks receiving SSI/SSDI often live on less than federal minimum wage
This is not a request to recognize lesser-than achievements or abilities in an inspirational way. It’s a shift in thinking towards recognizing that people do amazing things whether they are fighting a degenerative chronic disease, making $100k per year, or both. It’s a shift to recognizing that working for pay vs fighting to survive should not be seen as greater vs worse, lucky vs unlucky, happy vs sad – it shouldn’t be ‘vs’ anything!
If someone works 10 times harder than another just to brush their teeth, manage their health, work 5-10 hours a month or make it through all their doctor appointments, or go to bed, these must be recognized NOT as inspiration porn but as survival in an inaccessible world. It shouldn’t matter any differently that some are working hard to fight an incurable disease 24/7 while others may be *leading a company with perfect health (or vice versa) – they’re both using the same kind of cells in their body and brain to be successful within their realm of ability. *many disabled people also work for pay, lead companies, etc
We all have limitations, we just need to stop defining those limitations based solely on the experience of nondisabled people.
If we continue to define success using nondisabled norms (and the size of people’s bank accounts), we continue to support the assumption that “significant physical or mental hurdles” and “amazing contributions to society” cannot exist in the same sentence.
We the disabled don’t want pity. We don’t want to be inspiring. We want to be seen and recognized equally. We want to be acknowledged financially for the contributions that we make to society that are equally as valid as contributions by nondisabled people. Because many of us are working harder than a majority of the population to achieve anything at all.
Oh, and the disability benefits? They’re not icing on the cake. They’re essential to our survival.
I speak only from my own experience. My story and my words do NOT represent all disabled people. Our lives and our stories are as varied as the cells in our bodies.
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