Advocating for disability rights as a member of the community

So often, people with disabilities are pretty much automatically ignored, put down, or ostracized by our communities.

There are a lot of contributing factors, but I want to talk about some of those factors here today, as well as discuss what we can do(as individuals) to help the greater disabled community.

People with disabilities are often “othered”

There’s a lot that we’re fighting against, but most of it boils down to fear of the “other” and the discrimination that comes with it.  Many of us look different or behave in ways that others don’t fully understand. 

We often need some form of accommodation to be able to fully participate in society.  All of those needs are often viewed as “extra work” by society, and it often gets neglected. 

For example, elevators and ramps allow wheelchair users to access otherwise inaccessible spaces. These also improve the quality of life of everybody who rides in or pushes a stroller, people using carts or dollys, and many others.

There is also the social stigma. Being on any form of welfare program is often seen as being lazy or entitled, or cheating the system.

It’s embarrassing to admit that you are being supported by these programs.

This also discourages people on these programs from socializing much, especially from meeting new people, since in the US, “what do you do for a living?” tends to be a very common way to break the ice.

Answering with the truth will often awkwardly end the conversation, and lead to feeling alone and unworthy of attention.

When I met my partner’s extended family, and ended up admitting that I was supported by SSDI, one member responded with “you’re welcome”, since his tax dollars had contributed to my survival.

I had reached a point of comfort and acceptance that left me angry at his arrogance rather than unhappy with myself, but I still found it rude and demeaning.

What can you do?

• Create your short and sweet answer to “what do you do for a living?” Have a statement you feel comfortable making that will help you feel safe if somebody asks that question or something similar. In my case, I talk about this blog and may mention being on SSDI if it feels safe to do so. “Recovering from my condition” or “better understanding the medical care system the hard way” may be useful phrases if your primary focus is your health.
• You also may want to have a pat answer for “what happened to you?” People can often be rude and if you have a visible disability, they may feel it’s appropriate to ask you about your condition. If you have a comfortable and easy answer, you no longer have to stress about how to handle their rudeness. My answer tends to be that I have a movement disorder that acts up under stress. I’ve read some great sarcastic/snarky answers as well from people with more visible conditions who get asked much more often.
• If you hear others making discriminatory statements about people with disabilities, correct them!
• If you’re feeling brave, you also can own your situation more publicly. For example, I’ll get into conversations with people(on the train, usually) and when they ask about my career, I let them know that I’m actually on SSDI due to a movement disorder, and see if I can dispel a myth or two(I find this especially useful when they already know that I’m on my way to grad school or otherwise already proven I’m actively participating in society). 
• Guiding Others Towards a healthier understanding of your condition

Potential Employers

Even when we do want to work, many employers are unwilling to invest their energy into hiring people with disabilities, even though we tend to be highly motivated, purpose-driven, and full of creative insights.  

Year after year, various groups discuss the untapped potential of disabled employees. 

Year after year, they agree that some effort should be made to hire disabled employees or that something should happen to better engage with the disabled community.  And that’s usually where it stops until it’s brought up again, and for whatever reason dropped until next year.  

For employers, there is that same “otherness” issue that underlies much of ableism, plus the fear of extra time being taken off due to health problems.

There is sometimes an ignorant fear of “catching” the condition, and in many cases, they haven’t bothered to spend the money/effort to be ADA compliant or don’t know how to ensure nondiscrimination with their disabled employee.

Similarly, employers often fear that a female employee will get pregnant and have children, leading to additional time off or lower-quality work – one of the many biases female employees face.

In many cases, this is not a fully conscious, rational decision, but rather a knee-jerk, subconscious bias on the part of employers(who, in too many cases, are white men). 

Over 70% of all blind people do not work.  While there are likely some folks with additional conditions that make it more challenging to work, being blind in and of itself does not make a person unemployable.  

It’s the combination of lack of societal support, the challenge of getting access to a job that will make reasonable accommodations, and employers that will work past their biases in order to gain the best possible employee.

What can you do?

• If you have friends or family members who are employers, HR representatives, or otherwise involved in hiring decisions, make sure they understand your condition and the general issues that people with disabilities face when applying for work. This may help them respond better to a visibly disabled person or a person with resume gaps due to an invisible illness applying for work with them.
• Go out in public and normalize your condition. The less exposure people have to us, the more apt they are to be uncertain about how to behave or what to do. By going out and participating in society, you are showing everybody you see that people with disabilities are people, first and foremost.
• Keep an eye out for accessibility features or the lack of them. If you see stores that state that they are accessible, but aren’t(like having a step to come in), please call them on it, and help them understand what accessible really means.
• If you are applying for work, decide in advance if and how much you want to disclose about your condition. Legally, they are not required to know that you have a disability until you request accommodations after being hired. Sometimes disclosing may work to your advantage(like if you did a lot of work around your condition publically or if you can comfortably use it to demonstrate how it’s improved your mental flexibility or other job-related skill), but it’s more often a disadvantage(stereotyping and fears)

Health Insurance Concerns

People with disabilities are highly likely to need more medical care than your average person, so in general, our healthcare expenses and needs are higher than your average person’s. 

Besides concern about people with disabilities taking off too much (doctors are generally only available during work hours) or not being able to keep up with the work, there are also concerns about our effects on the company’s insurance programs. 

Maybe premiums will go up – or maybe the coverage is less than stellar but most employees don’t realize it because they haven’t needed to use it. 

There are a lot of potential issues here.

Generally, to be eligible for insurance, you need to work at least 35 hours a week. 

There are a lot of people with disabilities who could reliably and consistently work 15-30 hours a week but just can’t manage that last bit sustainably. 

With an earned income limit of $1550/month(2024’s SGA limit) once you are on a disability program, it’s hard to find a job or employer that’s willing and able help employees meet all the requirements for working while not losing insurance benefits.

Without health insurance, we won’t get the care we need, and won’t be able to work at all. For a good percentage of the disabled population, not being able to access medication can cause death.

For people with disabilities, finding a job that’s willing and able to help us get and maintain insurance is challenging – and the only other option is if our states have programs to work around the income laws, like New Jersey’s workability plan.

At one point, I had to convince my employer to cut my hours to 8 days a month in order for me to work full days and not lose my SSDI benefits. Being in the full day was vital for me, since I don’t drive, and the commute was just over an hour if I could get a ride in, and over two hours if I came by public transportation(including a twenty-minute walk from the train to the office).

What can you do?

• Research and support universal healthcare programs and other expansions to improve insurance coverage for all people. Through programs like this, employment and insurance will be less firmly tied, which will allow people with disabilities to feel safer applying for work and working.
• Be aware of the insurance rules you are under and educate others on insurance issues. The better you understand your own insurance coverage, the better able you are to advocate for your rights and coverage.
• Explain the connection between employment and insurance to others, so they can understand this aspect of the challenge people with disabilities face.

Social welfare programs, while helping people survive, also decreases their mental and emotional ability to work

There are a lot of social welfare programs that the US runs, and pretty much all of them include long waits, the potential to be humiliated by the employees who determine eligibility, strict income limits, and the social stigma and shame that the general population associates with being on ‘welfare’

Many of these programs are avoided unless there is no other choice, so the applicants are often already feeling low and insecure.

That combined with often being talked down to by the gatekeepers of the system(state or federal employees who either understand confusing laws or won’t admit that they don’t) increase the participant’s embarrassment and fear of failure. 

Embarrassment about being on a welfare program increases social isolation, and decreases the likelihood of making the connections that would get them a job!

While SNAP, LIHEAP, and other needs-based support usually take no more than a couple of months from application to coverage, SSI and SSDI cases can often take years, since they are based upon the combination of inability to work due to a disabling condition, and low enough earned income to qualify.

Applicants are expected to not work during this multi-year waiting period, since they are saying they are too disabled to work.

It’s a nasty catch-22, as that means that as people with disabilities, we’re left with increasingly high medical bills(one of the main causes of bankruptcy in the US), physical/mental/emotional limitations that make life harder(the disability), and the knowledge that if we try to earn money by working, we’re putting our health and benefits at risk.

We also need to keep up the medical care, because if there isn’t further medical information, we obviously can’t be that sick, right?

All of this puts us in these vulnerable and needy positions, on top of the vulnerability that our conditions cause. Altogether, each step of the process is corrosive to self-esteem and self-efficacy(the belief that you can successfully do things).

What do employers look for? High self-esteem backed by employment history(the better you can sell yourself, the apter they are to hire you), and self-confidence(which you don’t have with low self-efficacy).

The lucky among us have family and/or friends who are able and willing to help us through these difficult times, and possibly reduce the stresses by applying(or helping us apply) before it’s an emergency, providing necessities free of charge, or otherwise making sure that we don’t die while waiting for government support.

What can you do?

• Educate people on the nature and challenges of the programs
• Explain the rules of the programs and the limitations that come with them
• Ask the person if they’ve ever been injured/unemployed/otherwise put down or made weak, and how they got past it. In most cases, they were helped, either by family and friends or by the government. Encourage them to consider if things had been worse or lasted longer.

Because the systems are based upon income, working at all increases the risk of losing benefits

Generally, social welfare programs provide services and support until your earnings pass a designated “magic number”, which often changes on a yearly basis. 

The programs support you until the moment you pass the magic number, at which point all of that program’s support is pulled.  This means that bringing in that last $5 at work might cost you $150 in food stamps, your Medicaid coverage, and/or several hundred dollars of savings on your utilities(LIHEAP) per month. 

At the same time, it’s all built around your monthly income, so those months where you get a third(if being paid biweekly) or a fifth(if paid weekly) check may put you over for that month.

To make matters worse, if you do end up ineligible due to income, it can take the program(s) months to years to put the pieces together and figure it out. In the meantime, you get the benefits, but when they realize what happened, you get the repayment demand.

SSDI is defined as support for people living with disabling conditions – however, on top of the medical problems, people must also have substantial limits on their income in order to be eligible for support.

If you are “disabled enough” to be eligible for SSDI, they then need to know how little you’re earning every month – you maintain eligibility by staying under Substantial Gainful Activity(SGA), which is currently $1350/month.

That income is less than some people’s monthly checks – meaning that it’s easily possible to earn your way out of SSDI while earning less than the value of your monthly check(let alone the insurance).

SSI’s system is substantially different – as a needs-based program, the monthly check is generally smaller, and once you earn over $60/month, your check gets garnished $1 for every $2 you earn.

If you earn your way out of poverty, you’re no longer eligible for any of the supports SSI provides(Medicaid and SNAP).

The cost of working is high, and while it’s easier to get reinstated than to apply, you’re still taking about multi-month waits during which you can neither work nor receive your benefits. Sometimes it is possible to have the process expedited, but if you are later found to not fit their definition of disabled, you need to pay the government back.

Since SSI and SSDI are defined as disability-based supports, shouldn’t the benefits be based solely on disability? 

As things currently stand, a percentage of the disabled population doesn’t work out of fear and uncertainty caused by the way the program works.

While it is possible to make sense of it, you need to be reasonably well-educated, understand their definitions, and be willing and able to take the time to plug in all of your numbers to double-check if your specific work and your specific expenses make the cut.

Each of these pieces can(and often will) change every month. So if you’re earnings are close to any of the limits, one wrong calculation or an extra hour of work can mean that you were over the magic number, and therefore shouldn’t get your check next month. If you go over too often, eventually you will also lose your health care benefits.

Even with a college education, guidance from the New Jersey Division of Disability Services, and multiple conversations with people at my local social security office, I still have messed it up, and am currently facing fears of miscalculating as I work to monetize this blog.

What can you do?

• Share the income rules and limitations with your family and friends
• Give them a glimpse of how complicated the rules are, and remind them that these calculations must be made every month, or eventually, all supports will stop
• Keep up on the SGA limits, and consider working or volunteering when and if you are up to it

The medical model of disability

When people don’t think about disability much, they tend to use the medical model for disability.  The medical model focuses primarily on the physical issues – the damaged leg, the nonfunctional eye, the malfunctioning immune system. 

The medical model is about mitigating the physical damage so that the disabled person can mimic abled people as closely as possible. 

For example, people who, like me, are nearsighted, optometrists give us glasses (or contacts) to correct our vision issues, so we can see as well as people who do not have vision impairments.

The medical model, however, assumes(generally incorrectly) that people with disabilities will have full access to healthcare and that we will be considered within social norms once these adjustments occur.

Doctors, appropriately, follow this model in viewing their patient’s state of mind and physical health. This is not helpful under other circumstances.

The bigger issue is that the medical model places all responsibility on the person with the disability to manage their condition and figure out how to participate in the larger society.

What can you do?

• Help your loved ones and social connections understand that medical treatment and support often don’t leave you “good as new“
• Teach others about the life adjustments you have had to make due to your condition, and how differently you need to think about things now that you have a disabling condition.
• Help your family and friends understand the difference between being chronically injured or ill and being sick. By sharing these things, not only does it help make your life easier and safer, building empathy with those who care, but it also helps them to be more empathetic to others once they recognize these similarities.

The Bio-psycho-Social Model of Disability

Most people with disabilities(especially disability rights advocates) argue for a focus on the social model of disability. 

Using the social model of disability, society at large is the primary reason that people with disabilities are often excluded from the community and are unable to function “normally” in society. 

Instead of holding individuals responsible for figuring out how to get around and use publically available resources, the goal of the social model is to follow the concepts of universal design so that all of society can participate in public goods, like parks, streets, and public transportation.

It is the barriers that society creates that keep people who fit the normative standards at such an advantage over people who are physically, mentally, psychologically, or sensory non-normative. 

It’s the stigma placed on us, and the lack of accommodations that society has made that is the problem, not the physical, mental, psychological or sensory difference.  

It’s following the social model of disability at work when crosswalks have signals that also make sounds when the ‘walk’ symbol flashes, so that blind people know when it’s safe to cross the street too.

The social model of disability is behind curb cuts(for wheelchairs and strollers to easily go to street level or back on the sidewalk), braille on ATMs and signs, and all the other societal adjustments that have been made so far to accommodate physical impairments.  

These are the first steps, and they are good steps.  They just aren’t being taken everywhere or by every organization or individual that could enforce it.

The Americans with Disabilities Act has been around for over 30 years, and progress has definitely been made.  However, there is still a long way to go! 

People with disabilities are generally low-income, spend a disproportionate amount of our income on our medical care, frequently have to plan our movements much more carefully than non-disabled people, and often find places we just can’t go or things we just can’t do because the physical adjustments required for us to participate haven’t happened yet.  

What can you do?

• We can stand up for others with different disabilities.  When you’re out, keep an eye out for ADA compliance, and if it’s actually usable.  Also, if you share reviews of spaces, comment on their accessibility features(or lack thereof)
• If “accessible” places aren’t, let people in authority(and/or the public) know so it can be fixed.  While you might not need that accommodation, the next disabled person coming in may! 
• If you’re on public transportation, keep an eye and ear out for stop announcements and text announcing the stops – and if it isn’t functioning properly, take a quick note or picture and file a complaint after you get home.  Educate your family and friends so they can keep an eye out too! 
• There are also a fair number of apps out there now that discuss the accessibility of locations – if you can help fill them out or answer questions, you’ll also be helping out others with disabilities.  

Learn more about Our Community

Once you have a good sense of what your condition is and how it works, it can be really empowering to get a sense of our larger disability community. There is some amazing work being done by many folks with disabilities to help folks understand our experiences and perspectives, and it’s something that greater society has actively discouraged. It’s hard to learn about disability history as so much has been written through an abled lense. We also have been trained by the medical model to silo ourselves and only communicate with others who share our diagnosis or symptoms. We can break out of those silos by learning from other people with different disabilities, supporting artists with disabilities, and consuming materials created by others with disabilities

What can you do?

• Read books written or edited by disabled authors like Alice Wong
• Check out movies and shorts produced by ReelAbilities and other disability groups
• Learn about disability history through movies like CripCamp and books like A Disability History of the United States by Kim E. Nielson
• Follow disability rights activists like Imani Barbaran

Conclusion: You can be an advocate while managing your condition

Every time you publically live your life – leaving your home, conversing with somebody, or going grocery shopping, you are supporting the disabled community through advocacy. Whenever you push for your medical rights, the support from welfare programs, or explain how the system works or how you manage your condition, you are also advocating for the disabled community.

The better you understand what we aren’t getting and explain it to others, you are advocating for the disabled community.

The more aware you are, the better you likely can do this advocacy, but whatever you are doing is another step towards equal rights for the disabled community.

We have a long way to go, but each step you take is another push towards our equality – the more you do to reduce ablism, increase awareness, and help your fellow disabled folks participate in society helps. Keep standing up for our rights by standing up for yourself, and living the most authentic life you can.