How Rule Changes for CalFresh Will Positively Impact Disabled Californians

Photo of grocery store window says "we accept SNAP"

During the decade or so before I landed my current job, I lived in Los Angeles while receiving Supplemental Security Income (SSI). This is to say that I lived in a county where the average rent for a studio apartment was always slightly higher than my average monthly income if I wanted to live in a not-so-great part of town. Of course, roommates were always an option, and I like people. Yet the cost was still generally out of reach. And unfortunately, I have always had an extravagant side: in addition to shelter, I also have a great fondness for regular meals, running water, and electricity.

I lived with my parents and took to dogsitting or housesitting whenever the opportunity arose. When that wasn’t possible, I would car camp in national parks (thanks to the Golden Access Passport). There was a lot of joy in this life – being a lover of both dogs and good views – but it was also terribly exhausting and unsettling. I never felt entirely at ease, continuously passing through other people’s spaces as I was.

Every six months to a year, when I became particularly agitated either by cold weather or the low-key unspoken conflict of living with my parents (retirees with too much time on their hands, attention to pay, and an inconsistent amount of understanding), I would take to the internet and try to figure out a way to make the numbers add up. If I could live like a stereotypical college student – as many roommates as we could cram into the smallest possible space – I might be able to afford rent, possibly even pay a small portion of utilities. It always came down to food.

In California, people who receive SSI are ineligible for CalFresh, California’s version of the Supplemental Nutrition Assistance Program (SNAP). This was always the piece that kept me in my migratory pattern. Kept me from entertaining the idea that there could be a place that even a small fraction of could be my own.

As a novice disabled person doing research, I could never figure out the reasoning for the ineligibility. We lived at the appropriate percentage of the federal poverty line according to the CalFresh website, but Californians on SSI were exempt from receiving food assistance without exception.

It took moving to the state capitol and taking a job in disability advocacy to finally get to the bottom of this. In the mid-1970’s the California government implemented a “Cash-Out” program. Basically, in order to save the cost of administering CalFresh (then food stamps) to folks living on SSI, the state paid all of us an extra $10 a month for food. Though this amount never increased, there the law stayed. The whole time I was living on SSI income I was $10 a month richer than everyone on SSI in the other 49 states, but also, hungry.

Thankfully, after years of dedicated advocacy this “Cash-Out” law has finally been done away with. In June of 2019, Californians who receive SSI will finally be eligible for the $130 or so dollars per month in food assistance that CalFresh provides.

The reversal has been carefully crafted to ensure that no person on SSI, nor the people they live with will lose any of their necessary benefits. Californians receiving SSI will keep receiving the $10 per month, and the money they receive from CalFresh will not be counted among their assets. According to the California Department of Social Services:

  • If their household already receives CalFresh, and adding the SSI recipient would increase that amount, then their household will get an increase.
  • If adding the SSI recipient to a CalFresh household reduces the households’ CalFresh benefit, the SSI recipient will be eligible for state funded nutrition assistance called the Supplemental Nutrition Benefit (SNB) which will be added to the existing CalFresh card for the household.
  • If adding the SSI recipient leads to a total loss of CalFresh benefits for a household, they can get a state funded nutrition benefit called the Transitional Nutrition Benefit (TNB). Similar to the SNB the TNB will load directly onto the households’ existing CalFresh card.

Close to 400,000 disabled Californians and seniors will benefit from this change. Though $130(ish) per month doesn’t sound like much, certainly eligibility for CalFresh would have been enough for me to find that small sliver of an apartment somewhere to call my own. As I type this after a year of living in my own space – sitting quietly, alone at a desk that was for so long an out of reach dream – I cannot wait to see the positive effect that this reversal will have on my fellow disabled Californians.


Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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What Transportation Access Really Means for Disabled People

Photo of Christian standing in front of his car, which is parked sideways across accessible spots, in front of a restaurant called Pancake Circus

The strange man at the gas station in Utah approached shyly. I was alone, several hundred miles from home. It was one of those anonymous pit stops between where you’re from and anywhere else that sees a ceaseless tide of bleary eyed travelers, lost in thought, filling their vehicles with fuel and their stomachs with junk food and strong coffee. Tank refilled, I had just lowered myself into the driver’s seat and begun the awkward-looking seated twist I do when my joints have stiffened into place and not yet decided to fully loosen. “Let me help you,” the strange man said, stepping towards the halfway opened driver’s side door of my car, an out of place Scion with California plates very deep in Jeep country. His hand was already on the door handle.

Obviously, I can get myself situated in my own car. But I have never quite been able to fault strangers for kind curiosity, especially in such in-between places. I have to wonder, though – how did the strange gas station man think I had gotten here? Did he imagine some evil non-disabled person back in California shoving me in this car with a nefarious cackle and telling me to head east? This story was too interesting not to play along with. So I swung my body the rest of the way into the seat and laid it on too thick with a “Gee, thanks, mister!” out the opened window.

My car is the best mobility device I have ever used. The distance I can walk shifts from day to day, anywhere from a few steps to a half mile. The ability to hop in my car and get wherever I need or want to go is an unparalleled thrill that has filled my life with opportunities and adventures that would not be otherwise possible. It took three years and way too much rigmarole to recount to get my driver’s license. My car is modified; it has a gigantic rear-view mirror and a fairly expensive modification to make the steering wheel easier to turn. The expense and the hassle were nothing compared with the freedom and ease they have allowed me. But funds needed to adapt a car and the means to pass a driving test are not at all guaranteed for disabled people. Without an adapted car, you must rely on the goodwill and free time of friends or on public transportation for anything that involves leaving your house.

Access to public transportation has been a protected right of disabled people for over 40 years. Both the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990 provide protection for disabled people who want to use public transportation. In 1978 in Denver, 19 disabled people known as the “Gang of 19” blocked busses in their city to demand their basic right to use public transportation be met. But in 2019, we are still fighting to make accessible transportation a reality.

Disabled people in urban areas have stories of being left waiting for paratransit, of the appointments they miss and the opportunities they lose out on. Stories of accessible busses passing them by or stopping too far from the sidewalk to enter. Stories of impassible sidewalks and narrowly-avoided catastrophes when drivers fail to see us.

For disabled people in rural areas, the distances that must be traveled are greater and there are fewer accessible transportation options, if any. Paratransit must be offered only within 3/4 of a mile of a bus line and most rural roads don’t have sidewalks. This effectively leaves many of us stranded in our homes or risking our lives on narrow, generally high-speed roads.

Lack of access to the mobility that non-disabled people take for granted puts disabled people at risk and shuts us out of opportunities. You cannot find friends at events you can’t attend any more than you can hold a job that you can’t get to, or take care of your health at a hospital that may as well be on Mars.

Transportation is freedom. Yes, my trips into the wide-open spaces of the West can be characterized as frivolous, but like everything else, frivolity is not just for the non-disabled. This is my world and I intend to enjoy as much of it as possible. However, adventures aside, access to the reliable, accessible transportation that is my modified car – a toaster-oven looking wagon – is how I get to work each day, get to medical appointments, and keep up with the friends who give my life meaning. Without my car, given my disability, my world would be much, much smaller. I want to live in a world where disabled people have the freedom to live whatever sized life they choose regardless of their bank accounts or capacity to pass a test at the DMV.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Showing Up in Public in a Disabled Trans Body

artistic splatter illustration of a person swimming

The first time I limped out of the men’s locker room and into the YMCA indoor swimming pool area without a rash guard covering my surgery-scarred chest, I felt queasy. I was certain it would turn into an 80’s high school movie-style scene wherein every person in the room would stop what they were doing to point and proclaim their horror. The body of a visibly trans person is noticeable and vulnerable. The body of a disabled trans person is vulnerable and a spectacle: a parade float of difference. That day, nothing happened. Hardly anyone looked. One guy did, but then just looked away, and another gave me the overly-enthusiastic “you go boy” grin of awkward allyship.

I swam my slow laps, working the soreness out of my shoulders and neck, and felt good in my remarkable body while everyone else did their own thing. This is what queerness is. Showing all the way up in places that aren’t expecting anyone like you and making them yours. This is also what disability is.

On one hand this is fabulous. Since I never feel particularly welcome anywhere, I can write my own ticket and go wherever I please. On the other hand, feeling constantly vulnerable and uncertain of the welcome I will receive is exhausting. Much of my energy goes to risk assessment and working up gumption for actions that are terribly mundane. Frankly I would prefer to spend that energy on more interesting things.

I have a complicated relationship with the California cult of wellness and the broader western cult of self-sufficiency. I am the son of a surfer dad and a mom keen on taking off to the mountains whenever a spare moment arose. I grew up disabled, but aware of the joy that comes from moving through space on my own terms. The complexity only comes in when I have an audience.

Here’s the thing, I love my disabled trans body. And, yes, I have hated it, but not because it is trans or disabled, so much as because I am a person who has grown up in America on the cusp of the 21st century.

I love the lightness my body feels while it moves through water. I love the feeling of gently discovering new shapes that my limbs can make in adapted yoga classes, the feeling of discovering what I can do with my body in the shape it already is; of gently nudging it towards something new.

What I hate is the assumption that I am in the pool, or in these classes looking for a cure, or worse, to disrupt the people who truly belong.

Wellness spaces are often not safe for disabled people who like their bodies. I have been in gentle yoga classes and been surrounded after the savasana by well-meaning yogis telling me about the miraculous recoveries of some guy they met one time. Telling me completely unfounded tales of my bravery for essentially mildly stretching and then lying around for a bit smelling the essential oil diffuser and listening to that one rainstorm CD that every yoga studio plays during class. These conversations cause an instant tensing, shoving me out of the mellow, good feeling of being in my body and dragging me straight back to a world that wants me either cured or elsewhere.

I have found fitness spaces easier to navigate with a disability, but far more challenging of my trans identity. Walking into a men’s locker room as a trans man who sort of usually passes is always a leap of faith. Trans people have been beaten up or worse for far less.

The first question I asked when I joined the Y was when the quietest time was at the gym. I swim on Sunday mornings just after the retirement-aged swim team has finished practicing but before young families have gotten themselves out the door for swimming lessons. I would like to go more often, but am still working up the nerve to try weeknights when the place is full of young professionals.

My remarkable body has every right to be in these spaces. All of our bodies do. We have every right to the practices that allow us to celebrate the things that make our bodies happy, to move in ways that feel good for the sake of this good feeling alone. The dull and exhausting fretting is a price that must be paid until existing as a disabled trans person who enjoys their embodiment is no longer incomprehensible. But this is a change that we can’t control. For me to stop being a public spectacle, it’s the public that needs to change. Until then, I will keep showing all the way up.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Slowing Down and Embracing Surgical Recovery is Still Living

A cup of tea and pot of honey, a notebook and pen, and a blanket resting artfully on a bed, indicating relaxation.

I am working through one of those once a half-decade-or-so massive health shifts that folks with any chronic condition may find familiar: a rapid shift in function, surgery to implant more metal bits in me that set off alarms whenever I go anywhere with security, an opportunity to discover somewhat terrifying “fun” facts about the configuration of my unique body, an unwanted break from work that is not super well timed, and a chance to revisit and continue unpacking a lifetime of medical trauma.

Clearly, this is not a situation anyone would sign up for with enthusiasm. But here I am, several weeks out of skilled nursing, delighted beyond reason to regain capacity for things like cooking hot meals and showering without an audience.

All of this easily falls into a frame of frightening tragedy. More than that, it is aggressively shoved into that frame by folks who wish me well. Looks of sorrow and pity abound as declarations like “poor you” and “I wish this wasn’t happening to you” fly my way. I appreciate the empathy, but so many sad expressions can weigh a person down like cinder blocks.

There is a cultural expectation that when bodies shift quickly away from their usual functions, the time it takes to return to how they once were or adjust to the way they are now isn’t actually living. It’s as though the hour glass of my life got tipped 90 degrees while everyone else has continued rushing around doing the substantive work of being a human.

In theory I have spent my entire adult life rejecting this idea, rejecting this notion of tragedy. I say “in theory” because my body has been holding largely steady, fluctuating far less than when I was a child. My adult stasis allows easy use of this body to accomplish all that I desire. But the past few months have given me a crash-course in rejecting the idea of tragedy in practice – rejecting it in the face of a body that is falling apart, aching, and needing more creative maintenance than I am accustomed to.

I was completely prepared to feel terribly sorry for myself, to wallow in misery when my leg collapsed under me as I slowly walked across the smooth concrete of the parking lot. I enjoy a good wallow every now and again, and this one would have been entirely justified. What a dull way to break bones, and how poorly timed. I have half a drawer dedicated to consumptive Victorian pajamas that I call the “Woe is Me collection” set aside for these occasions. I may be anti-tragedy, but I believe in the restorative power of dramatically taking to one’s bed.

This has not been an easy recovery. Surgery was scheduled, intubation failed because of a fun new position my neck decided to hang out in, surgery was rescheduled a month later and finally done. Of the contingency plans the doctor had, A – Z for what he would find, seven hours in he ended up somewhere around plan S, basically using all of the screws he could find to stick my leg back onto my torso. Having no in-home support before this incident and living alone meant I had to organize supports with a head full of highly effective elephant-strength narcotics. And, apparently waiting for bone to grow onto metal takes longer than I had remembered.

But it hasn’t felt like recovery. It hasn’t felt frightening or tragic. I don’t feel like anything has been lost or gained. It has felt simply like my life. A good life. Time has passed, I read books, spent time with friends, learned new ways to move. Bone has grown and continues to grow. I have taken to my bed in Victorian gear, not out of misery, but rather out of a very ordinary love of comfort and rest.

Earlier this week I left my apartment alone for the first time in months. I crutched my way across the parking lot where my bones gave way late last summer, making it safely to my car, then on to a drive-through for greasy junk food, finally parking by the river to watch a squirrel sunbathe.

After spending months in my apartment, having this car picnic was a speeding up of my life, and I felt it as such. But it was the overall slowness that allowed me to take pleasure in the loveliness of the moment. My life is closing in on a pace nearer the one my body is accustomed to. This is great because I have a lot to do and I know I am lucky to have the chance to do it. And yet, the slowing down is not tragedy. For me it has been, and I’m sure will be when it comes again, an opportunity to notice details in life that blur past at higher speeds.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Midterm Elections are Over, But Our Work for Disability Representation in Government Isn’t Done

Photo of a person's finger with an "I Voted" sticker stuck to it.

Minority groups have always been under- or un-represented in office – a fact that has left far too many voices out of the process of creating the laws we all must live by. November’s election brought a shift as the government has moved a step closer to what it has always professed to be: representative. I believe the record-breaking numbers of women, people of color, and LGBTQ people elected to public office at local, state, and national levels will strengthen our government, enabling it to better serve more of the people it represents. But in all the discussions of this landslide of diversity, people with disabilities were hardly mentioned.

The National Council on Independent Living (NCIL) recently began compiling data on disabled candidates and lawmakers. There are currently 12 disabled elected official at the federal level. This year NCIL identified 20 disabled candidates who ran at the federal level. These numbers are far too small, but they are a start.

Of course, the decision to run for office is not to be taken lightly. Underrepresented groups face challenges no matter what our identities when it comes time to run for office. And for those of us with disabilities, there are barriers, both financial and accessibility-based, which can amplify this challenge. Running for office demands a grueling schedule, multiple stops per day in possibly inaccessible locations. But I believe that disabled people have the creativity to map a new path to office.

Disabled people willing to run for office will be opening doors for countless others. Disabled leaders bring insight to how best to build an accessible society AND encourage other candidates with disabilities to run by showing that it is possible.

As an example, Vox recently examined the progress and challenges faced by women running for office. One study found that if a woman became a state senator or governor, the next election cycle would see an average of seven more women running for office. In this light we must celebrate the disabled people already in office and ask ourselves, why not me?

In my high school advanced placement government and economics class, I half-jokingly told my teacher that if I hadn’t made it as a writer by the time I was 40 that I would be left with no other choice but to run for Congress. As I have been drawn into activism as I reach my late 30s, I have been slightly haunted by the memory of this statement. I have drawn up lists of pros and cons to weigh the idea.

Pro: I care a whole heck of a lot.

Con: I am terrible at speaking off the cuff and tend to use swear words the way other people use “ummm.”

Pro: I have big ideas about what social service programs should look like.

Con: When trying to read the laws that make up said programs, even ones that I have depended on, the words swarm in front of me like angry bees and I eventually end up reading novels and hiding for several hours instead. I have made pillow forts for this reason.

No, at the moment I am not your ideal disabled candidate. Instead I will do all that I can to support those who are.

For those of you like me, there is other work to be done. Once campaign season begins, we can follow NCIL’s list of disabled candidates and use the skills that we have to help those we admire get into office. We can volunteer, phone and text bank, help with fundraising, publicize the candidates in our networks on social media and in person, and we can even go work for their campaigns. There is work we can do even now, just after the election, perhaps the most important work of all. We can encourage our disabled friends to run for office.

In the age of the internet running for office has become easier than ever. Sites like Run for Office make it simple to know which offices are open in your area and can point you towards the information you need to get on the ballot. You can find resources to help support your campaign according to your political ideology and identities via NCIL’s page of resources or potential candidates.

People with disabilities are used to being left out when politicians list minority groups they plan to serve. Candidates and elected leaders with disabilities would be in a unique position to force a change that would move our government one giant leap closer to what it is meant to be: representative of the people.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Why We All Need to Fight for the Rights of Transgender Disabled People

Trans pride flag and LGBTQ pride flag waving on a flagpole in front of trees

It’s a difficult time to be disabled in America. We are stretched thin, fighting for our lives on multiple fronts. And when your own house is on fire, it’s understandable to feel that you lack the resources to fight for your neighbor’s home. But following the leak of the current administration’s anti-trans memo in late October, everyone in the disability community should be fighting for the human rights of transgender disabled people.

The anti-trans memo, recently reported in the New York Times, is a series of recommendations from the Department of Health and Human Services urging the federal government to redefine gender as a strictly binary (either male or female) state that is unchangeable and determined by the visual assessment of a person’s genitals at birth, or by genetic testing in the case of intersex people. If the recommendations in the memo become law, transgender people would be stripped of their civil rights protections guaranteed under Title IX. Our identities would be erased in the eyes of the federal government. We would have no protections at school, in the workplace, or in social services. This would be a terrible step backwards for the trans community as a whole. For disabled transgender people, however, the consequences will be the most dire, both because disabled people are more likely to rely on public programs, and because the mental health of disabled trans people is already at risk.

Following the publication of the anti-trans memo article, there was an overnight fourfold increase in calls to Trans Lifeline, a hotline for trans people in crisis. According to the 2015 National Center for Transgender Equality Survey, 31% of non-disabled transgender people reported currently experiencing psychological distress. Among disabled trans people, the rate was significantly higher: 59%. The combined rate of psychological distress, 39%, is nearly 8% higher than among cisgender people. The same survey reports that 40% of trans people have attempted suicide. Again, the rate is higher among disabled transgender people, 54%.

But being transgender, like being disabled, is not an inherently tragic state of being. Alone, or surrounded by supportive people, my trans disabled life ranges from a standard kind of nearing-middle-aged routine dullness to pretty ridiculously joyful. My big frightening radical trans disabled agenda, depending on the day, can include spacing out in my apartment with a nagging feeling that I may not have remembered to pay the gas bill, or on a more exciting occasion traveling somewhere with friends to discuss the petty grievances of our lives, the writing of novels, or bonding over incredibly silly jokes. That said, safety and respect are hard to come by and unequally distributed. The heightened rates of depression and suicidality are not because we are trans and disabled; they are because we live in a country that can’t decide if we contain the right sort of humanity to be allowed to get on with our lives.      

Disabled people are no strangers to the whims of governmental agencies. I was still reliant on Social Security for my income and healthcare when I began transitioning. Changing my name and gender marker took multiple trips to Social Security, Medicare, the county courthouse, the Department of Motor Vehicles, and the passport office. All of these trips and the hours spent on hold when calling to make sure that I had all of the necessary paperwork from the previous agencies took energy that my disability didn’t necessarily allow. I always went anyway, patiently, charmingly explaining my existence to each bureaucrat, because at the time my life depended on it. Though I started this process in December 2016, I still have a Medicare card with my dead name—my fourth incorrect card—but at least it has the correct gender marker? I would be on hold with Medicare right now if I hadn’t gotten a job that offered medical insurance.

Documentation matters the most for those of us who can lose access to the services we rely on to survive

The Department of Health and Human Services is a massive governmental agency which oversees a number of services specifically designed to serve disabled people. The memo urges other governmental agencies to adopt these destructive and regressive definitions of gender as well. If the recommendations in the memo become the law of the land trans disabled people will face a very real and immediate threat to the supports and services that they need to live. This is completely unacceptable. We must fight for the lives of our trans disabled siblings.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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For Disabled People, the Path to Employment is Still a Maze

A maze made out of U.S. $100 bills on a blue background.

Luck, an unusually high tolerance for throwing myself into the disquieting unknown, and a measure of family privilege have allowed me to forge a path through the working world that is best described as an erratic squiggle. A long arch here, and there several tight, retraced crooked lines doubling back on themselves darkly, shooting back near or behind square one, before darting forward to another page once more. The luck comes in because for all of the crisscrossing and backwards movement, the map of my employment is dotted with many points of interest and so far, has always kept me finding new territory.

For working-age disabled people in America in 2018 there is little assurance of any sort of direct access to meaningful employment. Certainly, the disability rights movement has made tremendous progress, yet according to the U.S. Bureau of Labor Statistics, the employment-population ratio for disabled people between the ages of 16-64 in 2017 was only 29.3%. In contrast, the ratio for people without disabilities in the same age range was much higher: 73.5%. Those of us who work are the fortunate few teetering on the knife’s edge of the employment gap separating us from our unemployed disabled siblings.

Currently, I have a job I enjoy that pays a living wage, has good health insurance, and allows me to work surrounded by supportive coworkers with significant knowledge of the social model of disability who are enthusiastic for me to succeed. In my late thirties, this is the first job I have ever had that offers all three of these at once.

Arriving here took more than a decade of sitting through countless job interviews that I knew were already over at first sight of my bent frame, interviews where I was told about an undependable previous employee with a “back thing,” and getting advice from well-meaning loved ones that I shouldn’t even mention my very visible disability at a job because I’m not “really disabled.” It has meant years-long streaks of un- or under-employment and an internalized expectation that I won’t be taken seriously.

No matter how hard I work, even while employed in the inclusive promised land, I will never be able to forget my past, nor would I benefit from doing so. There is a power imbalance between disabled people and the non-disabled that we are still far from evening out. The weight of this imbalance comes with the knowledge that if I lose a job there is no guarantee of another.

In my teens and twenties, I thought that non-disabled people must be supermen, possessing qualities that I, a lowly citizen of Metropolis could never hope to match. At that time, when I was employed, I hid my disability. Using all of my energy to do tasks the way that everyone else did them rather than ask for simple adjustments that would allow me to save energy and be more productive. Never speaking up when I was having a flare, working through them in ways that prolonged them and put my health at risk. This trap of not wanting to become the next disabled jobseeker’s “bad back” story, and employment insecurity demanded that I never acknowledging my body in any way that might be construed as complaint; even in the face of non-disabled people around me talking constantly about their own ailments. My silence was read as laziness and lack of interest. It wasn’t until I was in my thirties that I began untangling myself from these toxic lessons.

I wanted to understand how other disabled people are navigating these circumstances, so I posted a brief questionnaire to social media to find out. When asked, “What would your ideal workplace for yourself or other disabled people look like?” F Stuart, a photographer/educator replied, “If I could be HONEST about who I was without being judged (or treated like a freak) for it. I wish there were MORE disabled people in the work place. A larger variety of people always makes a work place better because everyone doesn’t assume everyone can understand each other and seem to try harder to communicate.”

The employment gap fails disabled people because it leaves us with so few people ahead of us to look to for guidance on our own journeys. Simultaneously we are left looking for work in a largely non-disabled-led and created system among an almost entirely non-disabled workforce. Though untrue, I often find myself grappling with the sense that I am the “first” disabled person to do almost anything. In situations where non-disabled people turn to one another for advice I must improvise. Often my best guess is wrong.

I am not alone in wishing for an easier to navigate path. Those of us fortunate enough to be in the 29.3% may often feel isolation and pressure to perform to needlessly impossible standards. Yet we represent progress. When I was born, this number would have been unfathomably high. We are the makers of maps. My greatest wish is for those who follow to have gentler paths.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Sex Education is for Everyone. Even Disabled Kids.

two hands holding together on blurred green background

We live in a society that desexualizes disabled bodies. This allows the topics of sex and sexuality to be left out of the educations of many young disabled people. As disabled students head back into the classroom this year, this absence of high-quality sexual education can instill at least two dangerous lessons within them. First, it can leave them with a sense that they are undesirable, which can in turn cause vulnerability to negative sexual attention or abuse that many do not feel safe enough to report. And even if individuals are able to avoid negative sexual experiences without guidance, they are still left to parse the basic sexual functions of human bodies with only the help of internet information roulette and their peers.

Some may get lucky enough to find helpful resources like Scarleteen (for which Rooted in Rights regular contributor s.e. smith is Managing Editor) or the work of disabled sexual educators like Eva Sweeney and Annie Segarra. Some may be lucky enough to have knowledgeable and body-positive peers. But many will not be so lucky. It is our responsibility as adults to guide young disabled people towards affirming and accurate information about sex.

Growing up a queer disabled person in the 80’s and 90’s, I certainly received plenty of direct messages about my own undesirability as a romantic partner, from a doctor who told me that sex was probably impossible for me because I didn’t do my physical therapy with enough enthusiasm (I was 10 at the time, so this was both gross and biologically incorrect), to the people who said that it would be unfair for anyone to fall in love with me because they would have to do too much to take care of me. Not to mention, this was at the height of the AIDS crisis, so the prevailing attitudes towards queerness were largely horrific.

With these messages I could have easily began my teen years thinking only that I was a burden who couldn’t ever have sex, and that if I did somehow manage it, I would likely die a tragic death shortly thereafter.

Salvation came in an uncharacteristically progressive sex ed class that my otherwise conservative (by California standards) town offered to all of its sixth-graders. One night a week, all of the eleven- and twelve-year-olds and their parents, all genders together, gathered in a huge room at the YMCA and learned about sex.

It was exactly as awkward as you are imagining it to be. No, it was more awkward. Melt-into-the-linoleum-and-disappear-forever awkward.

Yet the information was invaluable. We learned everything from the biology of puberty, to safe sex practices, to consent and the emotional realities of dating and attraction. There was a panel discussion led by teens only slightly older than ourselves who spoke openly about their own sexual experiences, both negative and positive.

This comprehensive knowledge, presented as a normal part of life, removed the shroud of mystery from sex and sexuality for me. I still shouldered much of the burden of negative attitudes towards disability and sex, and queerness and sex, but having the hard facts allowed me to recognize the misinformation that causes such societal discomfort. Knowing how my body works shifted my idea that disabled bodies are not sexual where it belonged – out of my head. It taught me that there’s nothing wrong with me, but rather something wrong with society.

So many years have passed since I sat in that YMCA. Yet the access I had to such frank and affirming sexual education remains uncommon. Attitudes towards disability and sexuality have shifted only slightly. Students with disabilities are not getting the basic information that they need to enter their adult lives prepared to safely navigate romantic and sexual relationships. Disabled students cannot wait for this glacial change. We must ensure their inclusion in quality sexual education programs throughout their education.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Picture This: a Disability Community That’s Truly Inclusive of All

A trolley with people on it in rolling through a march.

Close your eyes and picture a disabled person.

At work, one of my jobs is finding images to pair with our weekly newsletter articles. Since we are a non-profit that advocates for people with disabilities, I often find myself combing through stock photo websites looking for pictures of disabled people. I am met with hundreds of pictures of white, male, cisgender-appearing, manual wheelchair users.

Is this who you saw when you pictured a disabled person?

Certainly, these pictures reflect my whiteness, though in all other regards I would never be mistaken for any of these men. Yet for much of my life I pictured this default straight, white, male wheelchair user whenever discussions of disability came up. Not myself, nor my queer family, nor people of color, nor women. Often, the disability spaces I have been in have reflected as much, centering the same “typical” disabled people who populate conventional wisdom and stock photo searches. Intended or not, the message that those of us outside of that type matter less is apparent. We don’t entirely belong, therefore our needs are less important.

It has taken practice for me to unlearn the narrow image of who we are. Years of practice to imagine myself – so many of us – at the center of a group that we have always belonged to.

Christian, a white trans man, is on a trolley. He is smiling. Next to him, someone is holding the Trans Pride flag.

Last month I went to the annual Trans March that marks the start of Pride weekend in San Francisco. I hadn’t known about it until a friend told me less than a week before it occurred.

Less than a week to figure out how to participate in a two-mile-long march in a city I don’t know well had the potential for catastrophe. Or, at least, it had the potential for me to get all enthusiastic in the moment and push myself into the kind of pain and exhaustion that leaves me in bed for a few days or weeks, capable of little beyond taking handfuls of Advil, groaning intermittently, and napping. But I so wanted to go. I came out as trans four and a half years ago, and due to the somewhat absurd circumstances of my life this was the first Pride Month that I have been in the country for. I wasn’t about to miss marching and celebrating with my trans siblings.

But queer spaces have the same default white guy problem that disabled spaces do. The only differences are that where the disabled default white guy is disabled and straight, the queer default white guy is queer and able bodied. I assume that queer spaces will be inaccessible to my disabled body the same way that I assume disabled spaces will find my queer body distracting.

The Trans March was a revelation. Thousands of trans people of every description marching and celebrating themselves and each other. Amid the celebration we called out as one for equality, starting from the most marginalized and working forward from there. I took this all in from the front of the march in my seat on the accessibility trolley that the organizers arranged for those of us without wheeled mobility devices who would have struggled with the walk. Truly, it was the queer, multigender, multiracial, all-ability utopia we all deserve.

Yes, I was primed to enjoy the day no matter what, and yes, I can be disgustingly cheerful at times, but everyone I saw, everyone I talked to, seemed to radiate a similar experience of the moment. This left me with two questions. How had the organizers gotten it so right? And how can the disability community learn from this and improve?

The trolley itself is the first answer. I have no idea how one goes about renting a trolley. It must have involved planning. This shows that the picture of who would attend the Trans March had always included disabled people, just as it had included every other type of trans person. The effect of this was personally empowering, but more importantly, it meant that more people felt welcome and therefore more people showed up.

Inclusion as an add on is a start, but can often fall short of its goal. Feeling tacked on is better than feeling invisible, but neither compare to the feeling of belonging. Narrow definitions of who we are and which sort of people make up the “us” for which we plan events weakens our work by alienating many of the people we hope to reach. We must make diversity our default from the beginning if we want to harness our power for creating an inclusive world. 

Expanding our definition of who we are is a lifelong practice. Even so it can begin simply. We must listen deeply to people who have led lives different from our own. Read the articles and books they are writing, watch the movies and TV shows they are producing, and follow them on social media.  When we begin planning anything we must look to the people living at the intersections of disability culture, hire them to help us plan, and value their opinions. Through these small, consistent efforts we can expand our world until it is large enough for us all.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.