Finding love in an ableist world | Latest News & Updates at Daily News & Analysis

Gargi Gupta

In a society where the dice is heavily loaded against them, the differently-abled find that the insensitivity and ignorance they battle daily get amplified when it comes to romance and marriage. Gargi Gupta gets a sense of the challenges they face and how they cope

Preeti Monga was just six years old when she lost her vision. What followed next is a story more or less common to most differently-abled people in India – or used to be back in the 1960s, when Monga was growing up in Amritsar. She was chucked out of school in class VIII, and married off at 23 – "’Arrey, hamare baad koi toh ho isko dekhne wala (There should at least be someone to look after her after us),’ my parents thought," says Monga.

Except that it didn’t happen that way; her husband turned out to be abusive and a compulsive liar. That would have stumped many a woman, especially a visually-challenged one with two children. Not Monga. She got back to school, sat for the class X board exams via open school, learnt aerobics and started her own classes. Then, after becoming economically self-reliant, she filed for a divorce. "But I didn’t want to spend my life alone. I wanted romance, I wanted a partner," she says with disarming candour. And so, she proposed to a colleague she liked. Monga, at the time, was sales manager with a pickle brand. "He was ten years younger and said no. So I asked him again and again every day for 22 days until he said yes," she laughs. "When you want something, you should be ready to go for it. There’s nothing to feel shy about."

Preeti and Ashwini completed two decades of marriage this September.

It’s a heart-warming story, but Ashwini Monga is an exception in a country where the differently-abled battle staggering degrees of insensitivity and ignorance, attitudes that get amplified manifold when they seek a partner, someone to fall in love with, or marry.

More hurdles for women

Sweta Mantrii, a 29-year old freelance writer, editor and documentary filmmaker in Pune who has spina bifida, a condition where the vertebral column bones do not cover the spinal cord entirely. Mantrii studied in a regular school, has an MBA in communications management from a reputed private institute, worked and lived by herself in Mumbai for a year before coming back and has many friends, male and female. Yet, six years ago, a distant relative, presumably invited by her parents to help in their search for a groom for Mantrii, asked her to "Show me how you walk".

That was about six years ago, and her parents are still at it. Mantrii isn’t against marriage; she would like, like many girls her age, a partner, home, love, companionship. But it’s been a difficult quest marred by rejections and jolts to her self-esteem. Families of prospective grooms, says Mantrii, have "implied" to her parents that they expected a financial incentive in exchange for marriage.

"The problem is our social conditioning. Even men with disabilities expect to marry an able-bodied woman," says Versha Kewalramani, 29, a corporate lawyer in Mumbai who has a rare skin condition called epidermolysis bullosa, characterised by skin blisters. Kewalramani speaks of a gendered bias in marriage prospects of the physically-challenged. "While a man, if educated with a well-paying job, expects to marry an able woman, a woman is expected to only marry someone with a disability," she says. Kewalramani, by her own confession, has a "liberal, well-to-do" background, grew up in cosmopolitan Mumbai, went to a regular school and has a mother who pushed her to go out, travel the world, get a career and be independent. She’s just broken up with an able-bodied man she’d dated for a few months. This was her second boyfriend – her first had been a differently-abled man with whom, too, she broke up after a few months. "We found that we our personalities didn’t match," she says.

Romantic liaisons such as Kewalramani’s, with or without marriage in mind, may be fairly common especially among white-collar professionals in cities, but it is practically unthinkable for the differently-abled. As Mantrii found to her cost, her able-bodied male friends were fine with friendship, but were hesitant when it came to romance.

For those from somewhat conservative backgrounds, it’s often their own inhibitions that get in the way. "Unfortunately, most differently-abled people have a poor sense of dignity and self-worth, which gets in the way of finding happiness with a partner. And it’s the parents themselves who are responsible for not giving them a sense of self-confidence. Disabled members of a family are often not invited to come out and interact with visitors – as if they are a shame on the family," says Monga, who also counsels the differently-abled, including couples. "If their own families don’t give them confidence, then how do you expect them to overcome their inhibitions and take a chance with happiness?"

Neha*, a 29-year-old accountant with a real-estate firm, exemplifies such diffidence. Polio-affected and wheelchair-bound, she is apprehensive about marriage. "At home, I have everything to cater to my needs. My family is sensitive and cares for me. I am independent. I don’t know whether another person or family can be as sensitive to my problems. I’d rather be unmarried than find myself in an unhappy relationship. I am lucky my parents agree with me about this," she says.

Women with disabilities may have the dice loaded heavily against them, but men also face constraints when contemplating marriage or finding a partner. Forty-one-year old Ankur Dhir, who runs a small stationery business in Delhi and suffers from muscular dystrophy, says the thought of marriage has until recently been far from his mind. "It’s not just my disability. I first need to earn enough to support a wife and family before thinking of such things," he says. "It was hard because my parents died when I was young and I had little support. It’s only in the last two years that I feel I have the income and a household to offer a partner."

Blame it on the infrastructure

Others like Jatin Agarwal*, a software consultant in a Gurgaon MNC, want a partner who understands them and share the same values. "I’d like to get married to a differently-abled girl because I feel only someone who is differently-abled herself can understand me. But I also would like someone who is educated and independent and will fit in with my family," says Agarwal, who’s registered on several matrimonial sites in his search for a bride.

"The problem, even in cities, is that there are so few places where the physically-disabled can meet and interact," says Kalyani Khona, co-founder of Inclov, a matchmaking app for the differently-abled and people with long-term illnesses. Inclov launched early this year and runs an off-line initiative, Social Spaces, where the differently-abled who’ve registered on Inclov can meet. Khona, just 23 years old, points to her own difficulties in finding a public space with requisite accessibility facilities for the event: "How many restaurants in the city have ramps and toilet facilities for the disabled, or passageways wide enough for wheelchairs? In a place like Delhi, there are just one or two like that."

The discourse on the differently-abled, says Preeti Monga, has until now been largely limited to inclusive schools and colleges and making sure they find employment. "These are important, but more important, I feel, are avenues for social networking. After all, what’s the point if you don’t have friends or a family to come home to?" she asks.

It is needs like these that Inclov are helping to meet. In just nine months, the app has notched up 4,000 registered members and brought about one marriage. Monga herself runs a similar initiative called Fusion, which brings together the differently-abled and able-bodied so they can network for jobs or romance.

These are, as yet, isolated and periodic efforts. Inclov has had six such meet-ups in Delhi, Mumbai, Chennai and Bangalore, while Fusion meets have been held only in Delhi until now. But both Khona and Preeti Monga recognise the initiative needs to reach into small town India to be really effective. Inclov, for one, instituted an "ambassador" programme under which it will support anyone who volunteers to organise a Social Spaces meet-up. Monga, meanwhile, is trying to get the Rotary Club, with its wide network, to support Fusion so the differently-abled can take part in their meetings.

The idea is to get the differently-abled out and about, interacting with those like themselves and others, gaining in confidence. Marriage or romance can follow.

(*Names changed on request)

| Sun, 4 Sep 2016-06:35am , Mumbai , dna


An Alternative Form of Mental Health Care Gains a Foothold


Caroline White at the office of the Hearing Voices Network in Holyoke, Mass. The program, which relies on members supporting one another, does not use the words “patient” or “treatment.” Ms. White, who hears voices in her head, said psychiatric therapy had made her feel “hopeless, because the drugs just made me feel worse.”

HOLYOKE, Mass. — Some of the voices inside Caroline White’s head have been a lifelong comfort, as protective as a favorite aunt. It was the others — “you’re nothing, they’re out to get you, to kill you” — that led her down a rabbit hole of failed treatments and over a decade of hospitalizations, therapy and medications, all aimed at silencing those internal threats.

At a support group here for so-called voice-hearers, however, she tried something radically different. She allowed other members of the group to address the voice, directly:

What is it you want?

“After I thought about it, I realized that the voice valued my safety, wanted me to be respected and better supported by others,” said Ms. White, 34, who, since that session in late 2014, has become a leader in a growing alliance of such groups, called the Hearing Voices Network, or HVN.   At a time when Congress is debating measures to extend the reach of mainstream psychiatry — particularly to the severely psychotic, who often end up in prison or homeless — an alternative kind of mental health care is taking root that is very much anti-mainstream. It is largely nonmedical, focused on holistic recovery rather than symptom treatment, and increasingly accessible through an assortment of in-home services, residential centers and groups like the voices network Ms. White turned to, in which members help one another understand each voice, as a metaphor, rather than try to extinguish it.

For the first time in this country, experts say, psychiatry’s critics are mounting a sustained, broadly based effort to provide people with practical options, rather than solely alleging abuses like overmedication and involuntary restraint. “The reason these programs are proliferating now is society’s shameful neglect of the severely ill, which creates a vacuum of great need,” said Dr. Allen Frances, a professor emeritus of psychiatry at Duke University.

Dr. Chris Gordon, who directs a program with an approach to treating psychosis called Open Dialogue at Advocates in Framingham, Mass., calls the alternative approaches a “collaborative pathway to recovery and a paradigm shift in care.” The Open Dialogue approach involves a team of mental health specialists who visit homes and discuss the crisis with the affected person — without resorting to diagnostic labels or medication, at least in the beginning.

Some psychiatrists are wary, they say, given that medication can be life-changing for many people with mental problems, and rigorous research on these alternatives is scarce. I would advise anyone to be carefully evaluated by a psychiatrist with expertise in treating psychotic disorders before embarking on any such alternative programs,” said Dr. Ronald Pies, a professor of psychiatry at SUNY Upstate University, in Syracuse. “Many, though not all, patients with acute psychotic symptoms are too seriously ill to do without immediate medication, and lack the family support” that those programs generally rely on.  Alternative care appears to be here to stay, however. Private donations for such programs have topped $5 million, according to Virgil Stucker, the executive director of CooperRiis, a residential treatment community in North Carolina. A recently formed nonprofit, the Foundation for Excellence in Mental Health Care, has made several grants, including $160,000 to start an Open Dialogue program at Emory University and $250,000 to study the effect of HVN groups on attendees, according to Gina Nikkel, the president and CEO of the foundation. Both programs have a long track record in Europe.

About three quarters of people put on a medication for psychosis stop taking it within 18 months because of side effects or other issues, studies suggest. Some do well on other drugs; others do not.  “I was told by one psychiatrist at age 13 or 14 that if I didn’t take the meds, my brain would become more and more damaged,” said Ms. White, who began hearing voices in grade school. “Of course I believed it. And I became hopeless, because the drugs just made me feel worse.”  On a recent Tuesday, Ms. White and seven others who hear voices gathered at the Holyoke Center of the Western Massachusetts Recovery Learning Community, which hosts weekly 90-minute hearing voices groups, to talk about what happens in those sessions. The group meetings themselves, guided by a person who hears voices, sometimes accompanied by a therapist, are open to family members but closed to the news media.

The culture is explicitly nonpsychiatric: No one uses the word “patient” or refers to the sessions as “treatment.”  “We need to be very careful that these groups do not become medicalized in any way,” said Gail Hornstein, a professor of psychology at Mount Holyoke College and a founding figure for the American hearing voices groups, which have tripled in number over the past several years, to more than 80 groups in 21 states.  Most of the people in the room had extensive experience being treated in the mainstream system. “I was told I was a ticking time bomb, that I’d never finish college, never have a job, never have kids, and always be on psychiatric medication,” said Sarah, a student at Mount Holyoke who for years has heard a voice — a child, crying — and in college started having suicidal thoughts. She was given diagnoses of borderline personality disorder and put on medications that had severe side effects. She asked that her last name not be used, to preserve her privacy.  In the group, other members prompted her to listen to the child’s cries, to ask whose they were, and why the crying? Those questions led, over a period of weeks, to a recollection of a frightening experience in her childhood, and an effort to soothe the child. This altered her relationship with the voice, she said, and sometimes the child now laughs, whispers, even sings.

“That is the way it works here,” said Sarah, who is set to graduate from college with honors. “In the group, everyone’s experience is real, and they make suggestions based on what has worked for them.”  Like many of the other alternative models of care, Hearing Voices Network is not explicitly anti-medication. Many people who regularly attend have prescriptions, but many have reduced dosages.

“I walked in the door on Thorazine and thought I couldn’t get better,” Marty Hadge said. “About all I could do is lie on the couch, and the doctors would say, ‘Hey, you’re doing great — you’re not getting in trouble!’” Mr. Hadge is now a group leader who trains others for that role. He no longer takes Thorazine or any other anti-psychosis medication.  Not everyone benefits from airing their voices, therapists say. The pain and confusion those internal messages cause can overwhelm any effort to understand or engage.  “People will come to our program because they’re determined not to be on medication,” said Dr. Gordon, the medical director of Advocates. “But that’s not always possible. The idea is to give people as many options as we can, to allow them to come up with their own self-management program.”

To do that, proponents of alternative care have much work to do. The programs are spread thin, and to scale up, they will probably have to set aside their native distrust of mainstream psychiatry to form alliances with clinics. In parts of Europe, including Britain and Denmark, such integration has occurred, with hearing voices groups and Open Dialogue-like programs widely available.   In this country, there is very little collaboration. Ms. White runs a hearing voices group in the forensic psychiatry unit of a hospital in Springfield, Mass., and there is a scattering of other medical clinics that work with voices groups. But the culture gap between alternative and mainstream approaches to psychosis and other mental problem remains deep, and most psychiatrists and insurers will need to see some evidence before forming partnerships. Last month, the influential journal Psychiatric Services published the first study of the Open Dialogue program in the United States, led by Dr. Gordon and Dr. Douglas Ziedonis of the University of Massachusetts.  The results are encouraging: Nine of 14 young men and women enrolled in the program for a year after a psychotic episode were still in school or working. Four are doing well without medication; the others started or continued on anti-psychosis drugs. Insurance covered about a quarter of the overall costs.

“It’s tiny, just a pilot study,” Dr. Gordon said. “But it’s a start.”

Correction: August 10, 2016
An article on Tuesday about a movement toward treating mental illness with largely nonmedical approaches that are focused on holistic recovery rather than symptom treatment misidentified the location of Advocates, a center that runs such a program. It is in Framingham, Mass., not Worcester. And because of an editing error, a caption with a picture of Caroline White misidentified the location of Hearing Voices Network, where the photograph was taken. It is in Holyoke, Mass., not Worcester.

New York Times

Disabled passenger claims Air Canada denied him access to flight due to oversized wheelchair

Click here for the video

WATCH ABOVE: Tim Rose, a disabled man trying to fly to Cleveland, became emotional in describing his “dehumanizing” experience when an Air Canada representative told him that his wheelchair was akin to oversized luggage.

TORONTO – A Toronto man is accusing an airline of discrimination after he says he was barred from a flight because his wheelchair is about 13 centimetres too tall for the plane’s cargo area.

Tim Rose, 31, said he was told he wouldn’t be able to fly on an Air Canada flight this September to Cleveland, where he’ll be speaking to a large corporation about rights for people with disabilities.

Rose said he felt dehumanized when a representative from the airline told him that his wheelchair was akin to oversized luggage.

“I said, ‘This is discrimination,’ and they said, ‘No it’s not, it’s the same thing as if you had an oversized bag. If it doesn’t fit, it doesn’t fit.’ So essentially, she just compared me to luggage.”

The Canadian Transportation Agency says that transportation service providers must “ensure that persons with disabilities have equal access to federal transportation services” and accommodate people with disabilities up to the point of “undue hardship.”

It’s unclear, however, whether that applies to Rose’s case. The agency, a quasi-judicial tribunal mandated to ensure that Canada’s national transportation system is accessible to everybody, has not weighed in.

Rose, who works as an advocate for people with disabilities, said that while there are laws protecting the rights of people with disabilities, this situation is a bit murky because Canadian laws don’t explicitly mention mobility devices.

Rose said that since he posted about his situation on social media, all the airline has done to get in touch with him is post publicly on Facebook.

A representative from Air Canada said the plane that travels between Toronto and Cleveland – a CRJ regional jet – has a cargo hold door that is too small for Rose’s wheelchair.

The representative said the airline contacted Rose and presented him with two options: to take an indirect flight on planes that have a larger cargo door or to have the wheelchair transported on a different flight and sent to him when he arrives in Cleveland.

But Rose denied receiving any such offers.

“They have not presented me with any options. They haven’t even spoken to me (since posting on social media),” he said.

Rose said that taking a connecting flight isn’t a good option for him anyway because he also has a service dog, and transferring between planes takes extra time for him. In this case, he said it would be quicker for him to get a ride to Cleveland rather than take a flight with a layover.

In a video posted to Facebook, which now has more than 14,000 views, Rose said that there are no other carriers that offer direct flights between Toronto and Cleveland.

The Air Canada representative also said that the airline is looking at doing tests to see if there’s any way Rose’s wheelchair could be made to fit through the cargo door without causing damage.

Rose said all he wants is the same access to services as people who don’t need mobility devices. He said he’s not asking for special treatment – just the same access that everybody else gets.

Marc Roy, a spokesperson for Transport Minister Marc Garneau, said the minister’s office has held a number of roundtable sessions in the past few months to determine ways to “modernize” transportation policy, adding that an update to the policy is required every 15 years.

He said the most common feedback was about transparency in ticket prices, a faster security check process and greater accommodations for people with disabilities. He said there was a particular demand to make travelling easier for people with “invisible disabilities” like autism and dementia.

But Roy didn’t say whether any changes would be coming soon, saying only that they’re in the process of seeing “how or when” people’s suggestions could be implemented.

© 2016 The Canadian Press

Conventions Strike Out on Housing Crisis

by on August 1, 2016

Can Disability Rights Movement Offer Model for Housing Activists?

The Republican and Democratic National Conventions are over, and the nation’s affordable housing crisis has struck out. Not a single prime time speaker even uttered the words “housing crisis” or relayed stories about working people unable to obtain a safe, healthy and affordable place to live.

President Obama noted that veterans’ homelessness has been cut in half, and Cory Booker referred to 2.3 million homeless persons in America. But there was no housing policy discussion, and none of the personal stories about the crisis from “average” Americans that dominated the Democratic Convention.

A person watching both conventions could easily conclude that housing is not among the many problems besetting working people. Yet whenever cities do polls on the biggest problems people face, housing is inevitably at or near the top.

Why this stark disconnect?

The nation’s history since the mid-1970’s shows a direct connection between the withdrawal of federal housing assistance and the emergence of widespread homelessness. The federal government provides housing assistance to a smaller percentage of eligible recipients than ever before. The lack of federal housing aid is widely recognized as a chief cause of homelessness and the inability of working people to obtain affordable housing.

Yet affordable housing remains off the national political radar.

On January 28, 2016 I wrote “Why the Presidential Race Ignores Urban America.” This was still at an early stage in both parties’ primary process. Unfortunately, the situation did not improve. No question about the nation’s affordable housing crisis was raised at any of the many debates. Even debates that had questions from “real people” rather than media ignored the housing crisis.

Given this pattern of exclusion, when Hillary Clinton’s convention speech offered a laundry list of action plans for her first 100 days I did not expect to hear a call for one million new Section 8 vouchers or an emergency 10 billion appropriation for new affordable housing construction. I was right. But I was struck by Clinton’s focusing on people with disabilities.

This was no accident. Disability rights activists had long been working with the Clinton campaign to get their issues into her standard stump speech. The disability community kept up the pressure at the grassroots with activists launching an impressive social media campaign to encourage candidates to address concerns of disabled constituents. Using the hashtag #CriptheVote  the initiative held Twitter chats and its founders — activists Alice Wong, Andrew Pulrang, and Gregg Beratan — gave interviews and wrote about a wide range of issues disabled voters care about in an election year.

So when disability rights activist Anastasia Somoza spoke to the Democratic Convention on Monday night, and when Clinton then referencing her talk during her convention acceptance speech, it was the culmination of a focused campaign to get disability rights on the national radar. It’s no wonder that some concluded that “2016 is the year disability rights broke through in national politics.”

I understand that focusing on disability rights at the convention dovetailed with Clinton’s early personal history of helping to secure the right of disabled kids to attend public schools. But Tim Kaine was a fair housing attorney for 18 years and a founder of a Virginia organization seeking to reduce homelessness. Yet this aspect of his background did not trigger any prime time DNC discussion of policy proposals in these areas.

Disability rights vaulted on to the national stage and the affordable housing crisis did not because advocates for the former more aggressively and unceasingly pushed for a spot at the table. I say this not to criticize the millions of activists working on affordable housing and homelessness issues; rather, disability advocates’ success shows that activists can get the affordable housing crisis on the national stage if this becomes a top priority.

A Fall Strategy

Injecting demands for national action on America’s housing crisis into the Clinton-Trump campaign will not be easy. The campaign scripts have already been written and this is by all accounts an unusual election.

Yet there is still an opportunity to force housing to get attention when any of the four candidates topping the national tickets comes to your town. Consider how cameras at the DNC could not avoid regularly showing delegates wearing No TPP signs.  It didn’t matter that most prime-time speakers bypassed the issue; the message was delivered to millions.

A large turnout of housing activists wearing “Fund Housing” or another slogan at presidential campaign events might not cause candidates to talk about affordable housing, but the signs may well end up in media photos of the event. Or a housing rally could be called within the campaign event or nearby. Housing advocates have to start somewhere. When decades have passed without affordable housing being part of presidential campaigns, creating visibility with signs is an easy first step.

Housing activists should also seize upon the opportunities made available by the many competitive U.S. Senate and House races. Both contests often include smaller public debates where questions about House opposition to HUD funding can and should be raised. And activists can prepare media to push the candidates on their position toward increasing affordable housing funding.

And housing needs a hashtag.  Just as #CriptheVote mobilized disabled people and their allies to push the disability rights agenda, housing advocates should seize the tools that social media offers to galvanize voters and influence decision-makers. Whether it be #FundHousing, #HousingRights or something else,  activists need a hashtag that can unite all those who support national action on the affordable housing crisis.

Other Priorities?

Housing activists spend so much of the year protesting evictions, building support for housing developments and dealing with local state governments that it seems there is no time left to focus on federal campaigns. Presidential events are often scheduled on very short notice, so activists cannot spend weeks or even months preparing as the anti-TPP folks did for the DNC.

But the past four decades have shown that the absence of federal action has caused the nation’s affordable housing crisis to steadily worsen. Housing advocates must get the crisis back in the national conversation, even if the path seems daunting.

This means that housing activists must do what disability rights folks did: push, push, and keep pushing to demand their agenda reaches the national stage.

The price of inaction is too steep.

Randy Shaw is Editor of Beyond Chron and Director of San Francisco’s Tenderloin Housing Clinic. His latest book is The Tenderloin: Sex, Crime and Resistance in the Heart of San Francisco


Activists oppose ‘divyang’

Disability rights activists and organisations in the city are opposing the Central government’s decision to rename the Department of Empowerment of People with Disabilities to incorporate the word ‘divyang’ (instead of viklang) in its Hindi and English nomenclatures.

On Tuesday, social media was filled with status messages of persons with disabilities saying they did not want to be labelled divyang, which means divine body. “This is regressive terminology, which is dehumanising persons with disabilities – human diversities cannot be divine,” said B. Meenkashi of Equals, Centre for Promotion of Social Justice. “It also absolves the responsibility of the community and the government by making this is an individual rather than a social issue. Any identity should have a purpose — the purpose being that the government upholds the rights of marginalised people. This does not do that,” she said.

Despite several petitions and communications to the Prime Minister’s Office and the Ministry of Social Justice and Empowerment since December 2015, the terminology has been pushed through, ignoring the representations of persons with disabilities, said Vaishnavi Jayakumar, member, Disability Rights Alliance, Tamil Nadu. “Whatever is decided on the terminology for the disabled, persons with disabilities should be a part of the exercise. There is a lacuna in Indian languages for words for persons with disabilities and some words have not kept pace with the rights movement. This could have been an opportunity to formulate some, in a participatory manner,” she said.

This is just political scoring, said T.M.N. Deepak, State president, December 3 Movement. “This is an undemocratic way of labelling us. Terminology is not going to make a big difference without meaningful implementation of schemes meant for the disabled,” he said.

The Tamil Nadu Association for the Rights of All Types of Differently Abled and Caregivers, State general secretary, S. Namburajan, said they were calling for the withdrawal of divyang. “We are opposed to this terminology,” he said.

Centre to rename Department of Empowerment of People with Disabilities

The Hindu

4 Things You Should Ask Yourself Before Sharing Inspiration Porn On Social Media

Social media accounts and news outlets foam at the mouth to fill themselves with cell phone videos of such prom-posals, even though these do the polar opposite of normalizing disability.

Social media accounts and news outlets foam at the mouth to fill themselves with cell phone videos of such prom-posals, even though these do the polar opposite of normalizing disability.

Facebook posts can easily shape-shift into 21st​-century sideshows.

Spring is here, meaning prom season is upon us. As much as my 33-year-old self loves the vicarious joy in seeing what the kids are into — which is decidedly not French twists and chokers anymore — I shudder at the thought that my news feed will soon be inundated with a certain kind of prom-posal that stresses me out.

The kind of stories and videos I’m talking about are ones you’re surely used to seeing in your own feeds: ones where a person with disability is asked out to the big dance.

You know the scene: quarterback of the football team gives Girl With Autism a cookie cake frosted with the question “Prom?” Everyone claps. Video goes viral.

These pieces tend to spread because of the warm fuzzies they give the general population. However, as a girl who happens to be in a wheelchair, these videos make me very uncomfortable. Without fail, the person doing the asking is framed as a hero, and sometimes they are even interviewed on a talk show (if their story was especially popular).

The ask-ee? Well, they’re usually diminished to the recipient of a charitable act.

For a while, this breed of condescension was relegated to daytime talk shows and outlets with the journalistic integrity of Inside Edition.

But then social media seeped into every crevice of mainstream media. Clips about people with disabilities doing typical things are appearing on the nightly news, well — nightly.

Depending on how these stories are presented, they, more often than not, fall under the umbrella of “inspiration porn.”

This whole epidemic has led me to roll my eyes and yell expletives at my screens more times than I can count. If you’ve ever seen something akin to the following, you’ve definitely witnessed inspiration porn.

“This boy is blind, but can sing like an angel — watch his inspiring performance!”

“This woman born without legs just had a baby! Isn’t it a miracle?”

Meanwhile, I am usually on the other end of these, shouting the seemingly obvious: “What does vision have to do with vocal ability?” or “Legs aren’t attached to a uterus; why can’t she have a family?”

Given that I was a communications major, I get why these types of headlines are so accepted (even if they are nonsense). People like to feel better about society and hear something that isn’t terrorism or political infighting.

All I wanted as a high school junior was to do normal teen things and not have my differences pointed and “awwwwed” at en masse.


However, these seemingly innocuous stories are, in a very subtle way, reducing the subjects to their base level, judging them solely on their disability, and assuming that they are incapable of the same things as their peers, like hobbies or love.

Sure, exposure to people who are different is definitely a good thing, but the old adage, “Any publicity is good publicity” doesn’t really apply when you see that it could easily make one party feel less-than. Never is that weird saccharine spotlight more glaring than in the newest addition to the inspiration porn genre: the disability prom-posal story.

When I was in high school, I went to prom… with a date. Like 100% of teen girls, I was maxed out as far as insecurity and skewed self-image were concerned. Imagine my mortification if I, a wheelchair user, had been asked to the prom by an able-bodied friend — and received national attention because of it.

All I wanted as a high school junior was to do normal teen things and not have my differences pointed and awwwwed at en masse.

If a news source had hinted that my date was engaged in some kind of bizarre community service, basically insinuating that I was the most undateable creature on the planet, I likely would have taken the (very mature) path of locking myself in my bedroom and crying until graduation.

Kids today don’t have the luxury of flying under the radar. Social media accounts and news outlets foam at the mouth to fill themselves with cell phone videos of such prom-posals, even though these do the polar opposite of normalizing disability. In fact, their popularity is immensely damaging to our uphill struggle to be treated not as a spectacle, but just like anyone else.

If a person asks their classmate with a disability to prom, it should be because they want to go with them, or, perhaps, in part because they feel it’s a nice gesture — not because of public recognition and praise that are both peppered liberally with words like “amazing” and “brave.”

Ugh. It’s enough to make me rip my hair out.

(But then, who knows? Maybe the “story” of my rocking a bald head and a wheelchair would be trending. I can see it now: “You go, girl! Brave young woman shows us the true meaning of inspiring beauty!”)

I get it. Healthcare and transportation and the overall status of rights for people like me suck, so this seems like small potatoes on the spectrum of disability issues.

But, unfortunately, I think it is reflective of a bigger problem. Often, when people with disabilities are portrayed as being “just like anyone else,” they are more or less being made into a curiosity, which only further highlights their differences. Facebook posts can easily shape-shift into 21st​-century sideshows.

Here are a few things to ask yourself before you hit that “share” button:

  1. How would I feel if I were the recipient of the kind of attention given in this story?

  2. Is the thing the person is being lauded for even directly affected by their disability (e.g., a child who is deaf being good at baseball)?
  3. How is the person depicted? Are they treated as an equal?
  4. Whom is the story serving? What is the intended purpose of the story?

I know it’s going to happen every year like clockwork, but just once I would love the headline to read a bit differently:

“Girl who happens to be in a wheelchair gets asked to prom… because she’s super fun to be around!”

Disability Representation and the Problem with “Inspiration Porn”

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Inspiration Porn

Imagine waking up and realizing that your right hand looks, moves, and feels completely unlike your left hand. You stand up and walk over to your dresser and notice you are limping, but decide to ignore it and get ready for your day. As you lift the shirt you’ve chosen to wear and pull it over your head, your right arm suddenly stiffens, and it takes an additional two minutes to get your arm through the armhole. Once you’re dressed, you figure that the worst is over — until you go to tie your shoes. Your fingers on your right hand cannot grip the shoestring long enough for your left to do most of the work. L

ater, you leave to meet a friend for lunch, but when you step outside you notice that people you don’t know are staring at you, wide-eyed and open-mouthed. You try your best to avoid their gazes as you enter the restaurant. Your knees begin to buckle, and you know you’re going to fall.

All of this, which might sound unfamiliar to you, is my everyday reality. Strangers who see me often let their curiosity get the best of them. They watch me walk down hallways and up store Image result for inspiration pornaisles, their eyes on me, expecting an explanation. I could tell them about my cerebral palsy, explain that this is a disability I was born with, but there is never enough time to say the things I wish to.

No, I’m fine, I really don’t need your help.

I don’t know the exact type and name of the cerebral palsy I have.

No, you don’t need to speak to me slowly. I understand you just fine.

Sometimes I feel guilty, cowering under beady eyes. I feel guilty for the desperate way in which I do desire to explain myself to complete strangers, and then I remember that I shouldn’t have to.

Growing up I didn’t have access or exposure to people like me. There was no one with a disability acting on television, no songs I could listen to or books I could read that might have reflected my life back to me. Couple that with being a Black girl with a disability, the representation simply wasn’t there. The only disabled folks I ever saw on TV were the ones placed in froImage result for inspiration pornnt of a camera at telethons promising to raise money for disability research — the same telethons that were often criticized by people with disabilities for their negative attitudes about disability. We never watched a full telethon, but sometimes we caught them in between commercials. I’d sit impatiently on my living room floor, watching as the host stood beside a person in a wheelchair and told their story, sometimes crouching down beside them as they spoke in a belittling, babying tone. I remember thinking that these people with disabilities, the people the telethons choose to show and exploit, were not the only types of people with disabilities.

There is a sad truth known throughout communities of people with disabilities: exploitation. In lieu of telethons, a plethora of videos now make their way across various social media sites. These popular videos, known to some as “Inspiration Porn,” use the stories of people with disabilities and cut them into thirty-second clips with a dismissive and harmful caption along the lines of ‘Wow! I need to be thankful for what I have!’ Oftentimes these videos are shared with me by well-meaning friends and family. They expect me to be amazed by the man who can drive with his feet, the lady who is raising three kids without her legs and arms, and the child who excels at painting with a brush held in his mouth. These videos usually precede some sort of comment about how I shouldn’t feel upset over the hand I’ve been dealt, because other folks have it worse.

Here is the thing: the hardships of other people with disabilities don’t make me feel better. These videos don’t amaze me. They make me angry, because they are packaged to alleviate the misguided guilt of non-disabled people for not having disabilities. I used to announce that I was proud of these people with disabilities and of their innovation until I learned how ridiculous that very idea was. They never asked for my pride, and they don’t need it, because the act of survival doesn’t warrant the same immediate celebration for folks without disabilities. My loved ones who show me these videos don’t understand why they are so harmful. They’ve never stopped to ask themselves why they see a mere adaptation to circumstance as inspirational.

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Disability Representation and the Problem with “Inspiration Porn”

Most of the “inspirational” videos exploit the idea of attitudinal “inspiration,” the expectation to always “look on the bright side,” but that is just not the way the spectrum of human emotion works. No one is happy all the time, everyone has bad days, and it shouldn’t mean that their stories don’t matter. These videos feed the dangerous and dehumanizing expectation that all people with disabilities should strive to achieve behavioral “inspiration” — by adapting to the world; i.e., driving cars or cooking with our feet, doing our hair with the use of one arm. We are seen as extraordinary for these very things when they are really just daily acts of living for many disabled people. These behavioral “inspirations” also lend themselves to the idea that those who have not adapted in the same way are somehow less deserving of support or praise. Those who do not comply are to be ignored and dismissed.

There is still little to no genuine media representation for people with disabilities, especially those of us who are also people of color. At 24, I’ve now stopped to ask myself how the lack of proper representation has shaped the woman I am today.

I wish I could say that I love this disability, that I have grown to accept it, but I haven’t. Not yet. I still pick apart the things I can’t change: the permanent limp, the aching knees, the hand with curved fingers. All the things strangers seem to notice about me first are also the things I used to wish away. When I go out in public, I feel like the main event at a circus, the lion without a tamer, pulling the attention of passersby, nervous as they fill the surrounding seats with baited breath. But I do not want to put on a show, I just want to blend in.

The older I get, the more my anxiety in crowded spaces builds. I can’t help the way my heart races if a set of eyes I do not know lingers a moment too long, or if the question “What accident were you in?” falls from the chapped lips of store clerks and strangers. Often these strangers demand conversations about disability that I never wanted to have. They assert a false dominance, or state their unsolicited opinion. Once, while headed to my college senior capstone class, I was stopped by a woman who insisted on helping me with a blue folder that had slipped briefly out of my right hand. After reassuring her three times that I was fine on my own, she became indignant, blocking the snowy path to my building with her worn-out boots and demanding that I be thankful for what she considered her “random act of kindness.” I let her yell, watched as her right hand found her hip and her nose reddened from the cold. I let her yell, tightening the grip on my folder. She soon walked away in a huff, and I spent the remainder of the day wracked with guilt, wondering if I should have just let her help me even though I didn’t need it.

My disability gives me experiences, confrontations, and responsibilities that I didn’t ask for. It is a constant reminder of the societal pressure to rise above bad days, both physical and mental. I am, after all, an “inspiration” — or so I am told. But I don’t want to be an inspiration, especially not the kind other people expect me to be. Their “acceptable” versions of people with disabilities are expected to be happy and grateful, and if we aren’t then we are “bitter cripples.” We are then cast away, dismissed for being “mean” and “angry,” because we don’t conform to the smiling, excited, happy-to-be-alive personas that people without disabilities tend to feel most comfortable with. There is nothing wrong with being a happy and grateful person with a disability, but there is something wrong with the exploitation that unfair expectations breed.

I’m often resentful of this body that I am housed in. I am not able to go through life constantly wearing my disability like a badge of honor. I used to have a reoccurring dream that I was a snake, eager to shed this skin to arrive anew, to rid myself of an arm and leg that felt like a parasite I couldn’t shake. I used to want a second chance, a second body to jump into, so I’d know what I was missing. Sometimes, I still do.

Around this time last year, I made a list of all the things I didn’t like about myself. It was 21 items long. Then I sent my closest friends a text message that read: “I have to ask you a serious question. I want the truth, so don’t sugar-coat it. How long did it take you to see past my disability after we met?”

I do not know what answer I was expecting. Maybe an affirmation of what I always thought was true, that I am an embarrassment to my friends, that I held them back in some way. I expected them to tell me that my disability was too much for them, the way it often is for me. I received variations on the same answer: It was never a big deal to them; it was a thing they noticed at first, and then it became something they didn’t focus on.

I felt relieved by their answers, but now I am unsatisfied with my own. Now I find I want to belong to a real community of disabled folks. I want to ask them how they learned to like and love themselves. I want to try and love myself, too, one day.

When a tweet of mine about including disabled girls in feminism blew up, my good friend messaged me and asked, “Is it weird/wrong that I don’t see you as disabled, I just see you as a person? I completely forgot about your disability.”

I paused for a moment. I know this friend well; we talk often about feminism and politics, pop culture and the college classes that changed how we saw the world. We sat behind phone screens with a three-hour time difference between us, and had the best conversation about disability I have ever had with a non-disabled person. I explained to them that this idea, while its intent may be complimentary, is actually erasure. Telling me or other people with disabilities that our disability is something to forget is just as harmful as when my Blackness is erased with the claim “I don’t see color.” The problem with dismissing or ignoring these things about me is that doing so feeds the idea that we should ignore the things that make us different — that we should feel shame and guilt just for acknowledging that we don’t all share the same privileges or lived experiences. My Blackness, like my disability, is something that everyone sees, and even on days when I wish the latter to fade away, it will always be there.

When parents scold their children for looking at me or asking me questions, I often urge them not to, because I want to be the one to tell my story. If we don’t allow people with disabilities to tell their own stories, we run the risk of letting “inspiration porn” be the only access most other people have to us. If we aren’t able to tell our own stories, perhaps we will be erased from history, our truth fading away one Facebook video at a time.

I do not want to be an “inspiration” because I’ve found a way to adapt and survive. If I am an inspiration, let it be because my words inspired someone else to put pen to paper for the first time in a long time. Let something I’ve said, created, or nurtured be the thing that inspires people. These are the things I am most proud of. These are the things I want to celebrate on my own terms.

Keah Brown reads a lot of books and watches far too much TV. Her work has appeared in Cactus Heart Press Literary Magazine, Femsplain, Saturday Night Reader, and Atticus Review, among other publications.