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

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An India Where the Disabled have a Choice

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Dr. Nirmala Narsimhan

The Roundtable on Digital Access to the Disabled held in Bangalore brought forward many issues related to the topic. Dr. Nirmita Narasimhan, Policy Director, Centre for Internet and Society speaks to Dr. Archana Verma about the problems faced by the disabled while using technology. Being herself partially visually impaired, this is an interview from an expert as well as the personal experiences of a person from the disabled group.

Q-Please throw some light on the issue of the inaccessibility of mobile apps to the disabled, since these have become essential for independent living today.

While mobile apps are fast becoming the preferred and often the only way to access services, these remain unavailable to a large section of the Indian population living with disabilities. This is because they are not designed in a way which conforms to standards of accessibility and cannot be used by persons using assistive technologies such as screen readers. Apps such as Ola, Uber, Big Basket, Make my trip, Flipkart, Myntra and most others are not completely accessible. The inaccessibility varies from total inaccessibility, where the screen reader remains absolutely silent and is unable to give any information to the user opening the app, to partially inaccessible, disallowing persons using screen readers from accessing complete information or from completing transactions. For instance, if one opens Flipkart, one hears a button labelled home page banner and then the screen reader just keeps saying button for whatever is pressed, without being able to give any information on what the buttons are for or what is written there. Similarly, if one opens Myntra, one doesn’t hear any information at all, just a series of clicks, at one point one hears buttons labelled for man, for women, for kids and then when one presses any of those, one is again greeted by complete silence. The Big Basket app also has problems such as unlabelled buttons and fields and makes it difficult to carry out transactions such as changing the quantity, changing the address etc.

It is rather sad that the IT industry fails to realise that persons with disabilities, a group which is the world’s largest minority and account for a very large percentage of our population can potentially be amongst the biggest consumers of these ICT products and services. Consider before the advent of technology, a blind person could not read mainstream books and newspapers, work in routine office environments, shop alone or pay bills, file returns etc. on his/her own. Now, when everything can be done on line and there is technology which can read out and assist blind persons to use computers/ phones themselves, they offer the opportunity to negate the limitations of disability. However, this is not happening because products and services are not designed and developed in compliance with standards of accessibility and universal design, resulting in them being ineffectual or useless for persons using assistive technology. If the apps and websites conform to accessibility standards, Developers need not test their software against each and every disability, which can get understandably complicated, they are automatically accessible to persons with different disabilities in one way or another.

While accessing necessary services and information itself is challenging and often impossible for the disabled, the ability to access and enjoy games like other people is completely beyond imagination, not even something one could dream of said a friend of mine. I asked my friend Dinesh Kaushal, an accessibility expert who heads development of NVDA, an open source screen reader for the blind in India what his experience with the new gaming app Pokemon Go was, which is all the rage nowadays and he said that it was completely inaccessible. There is absolutely no information on the game screen and the Android screen reader Talk Back is absolutely silent. And this according to him this is not uncommon in many gaming apps.

Q- Highlight some of the problems related to the inaccessibility of websites and content to the disabled.

Web site inaccessibility very often hinders a person using assistive technology from accessing information on the internet. A web site can be inaccessible for different persons because of different reasons, depending upon the disability. However, this can be solved by compliance with standards. Inaccessibility of websites also hinders accessing content on mobile phones or affects persons with limited bandwidth or elderly persons.

While progress is being made to make government web sites accessible, this has not yet been completely achieved. In addition, web sites of important services and organisations such as banks, health care, education etc. are often inaccessible. Often a person using a screen reader may come across an important document which is an image file and cannot be read by the screen reader or a deaf person cannot enjoy an audio visual clip because there are no sub titles. Web sites with frequent flashing and flickering, constantly changing pages, images without descriptions and unlabelled form fields and headings, audio visual media content without subtitles, image files of documents without alternate accessible format options continue to populate the Internet. Unless web site accessibility is taken seriously and is treated as a non-negotiable ingredient of a contract for web site development and maintenance, the Internet will continue to be inaccessible.

Q- Can you enumerate the policy and guidelines requiring web site accessibility and the large spread of non-compliance with them?

Although most transactions happen online today, the fact that websites do not conform to universal standards of accessibility render them unusable by persons with disabilities.
The World Wide Web consortium has had accessibility standards for web site accessibility for over a decade now and these have been adopted by many countries around the world. This standard is known as the Web Content Accessibility Guidelines (WCAG) 2.0. India also notified the Guidelines for Indian Government Websites (GIGW) which borrows from the WCAG 2.0 to ensure that government websites are accessible. The National policy on universal electronic accessibility was notified in October 2013 and requires conformance to standards of accessibility. It mentions W3C standards such as WCAG 2.0, ARIA and ATAG and identifies procurement as a route to make electronic infrastructure accessible. It also identifies strategies such as awareness raising, training, research and development of assistive technology as vital to implementation of the policy and allocates different roles to different stake holders, including to ministries, departments, private organisations, etc. Other commitments are to be found in the accessible India and digital India campaigns, commitments under the UN Convention on the Rights of Persons with Disabilities (UNCRPD) which requires government to make all ICT and Internet available and accessible to persons with disabilities and encourage private service providers to make their services accessible, Access to ICTs are also covered under the goals of the Incheon Strategy to make the rights real for persons with disabilities.

Q- Give us some information about the work of the Centre for Internet and Society (CIS) in the realm of the digital and technological accessibility for the disabled.

We are an eight year old organisation. Our accessibility programme works in multiple ways, which include the following –

(A) Policy research and advocacy (initiating and contributing to new and existing policy discussions to bring digital accessibility on the agenda: We started our work on 3 issues:

(a)Website and electronic accessibility – We produced research on what different countries have in terms of policies, guidelines and measures to promote website and electronic accessibility and worked with the Department of Electronics and information technology (DEITy) to formulate the National Policy on Universal Electronics accessibility which was notified in 2013. We also serve on the Implementation committee.

(b) Getting an exception into the Indian Copyright Act to allow conversion of books and other copyrighted works into accessible formats without the need to get permission from copyright holders. We provided research to MHRD on what other countries have in terms of copyright exceptions to promote access to published works for persons who are blind, have low vision or other print disabilities, we carried out a right to read campaign around India, provided submissions to the standing committee and finally were able to positively influence, along with other NGOs, the amendment to the Copyright Act in 2012.

(c) Aiding the negotiation of a Treaty at the World Intellectual Property Organisation which would facilitate international sharing of books for persons with print disabilities. We attended the negotiations at Geneva from 2010 and are a permanent observer there now, intervening and providing research advice on various issues. The Marrakesh Treaty to Facilitate Access to Published Works for persons who are blind, visually impaired or otherwise print-disabled was concluded in 2014 and India was the first country to ratify it. The 20 ratifications required to bring the treaty into force just got concluded on June 30th 2016 and the treaty will come into force from 1st September 2016.

(d) We also worked with the Universal Service Obligation Fund of India to launch a pilot scheme to fund projects for persons with disabilities in rural areas.

(e) Apart from the above, we have produced global reports with international partners like the International Telecommunication Union and G3ict on topics such as mobile accessibility and produced research which we sent to relevant government agencies on topics such as banking and financial inclusion, emergency and disaster management for persons with disabilities, accessible broadcasting and so on.

(f) We are implementing a project to develop text to speech for several Indian languages using an open source speak synthesiser called e-Speak and enhanced working of NVDA an open source screen reader which works with English and other Indian languages. We have also carried out several trainings on this software around the country.
We also provide advice to governments and organisations in other countries on ICT accessibility related issues. We have also organised trainings on web accessibility and other topics as may be required.

Q- What kinds of challenges are faced by the CIS in its work?

Limited resources – very few donors fund the kind of work we do although no one denies the criticality and usefulness of it. Neither do we fall within the bracket of a traditional organisation serving persons with disabilities, nor is accessibility as marketable a topic as say something like privacy and cyber security, hence to have a team which can actively carry on this work of research and advocacy, constantly responding to policy developments, attending meetings is very difficult and we are not able to do the kind of work we want.

Q- What kind of vision of empowerment would you propose for the disabled through digital accessibility? How can this vision be achieved?

My Vision- Every person with a disability in India is able to access the Internet, content and facilities through an ICT enabled device, be it computers or phones; where this access is unhindered by barriers and is instantaneous, not retrospective. Further, I speak for an India which is inclusive in the complete sense, i.e. accessibility standards are part of mainstream standards and Universal Design is the standard approach to creations and developments of all kind and not where separate considerations need to be made for the disabled on specific products and services. Where a person with a disability has a choice, as do the other citizens and not where they are given an option; they have access to the world at the same time on the same terms; where there is true equality and we live a life with dignity and pride.

How Can We Achieve It?

India has already taken certain steps to show her commitment to accessibility –

We have ratified the UNCRPD, are part of the Incheon Strategy to make the rights real for persons with disabilities and are in the process of passing a new Rights of Persons with disabilities legislation. We also have a National Policy on Universal Electronics Accessibility, Guidelines on Government Websites, the Accessible India and Digital India campaigns and the Smart Cities Mission. There is ample opportunity and scope for ensuring accessibility is implemented to give complete effect to these. Some of the areas where action can be taken include:

1. Web site accessibility should be taken up immediately since it affects access for all on using different platforms. The plan can identify number of web sites and different stakeholders and the time lines by which they are required to make their web sites compliant. Both self-certification as well as regular audits should be carried out to check for compliance.

2. Public Procurement is another critical tool in the hands of the government to ensure that all public infrastructure and all facilities/ resources/ products/ services procured out of public money or for the consumption/ use of the public should be made accessible. This is increasingly being adopted in countries around the world. India has a draft procurement bill, several organisations serving the disabled have given a request for the inclusion of accessibility considerations within the procurement bill, we hope they will be taken seriously. By including compliance with accessibility standards as part of performance criteria in all government contracts and calls for proposals and contracts for development and maintenance of products and services, we can ensure not only that web sites etc. become accessible, but that competence is generated in the market to create and market accessible products and increase choice in the market for persons with disabilities.

3. Government ensuring that accessibility requirements are integrated in all government schemes and programmes and accessibility should be considered no longer a matter of choice, but of necessity. There are budgets for different ministries and agencies, there should be a mechanism to evaluate that all the budget set aside for meeting the needs of persons with disabilities are expended meaningfully and not accumulated or go back to the main kitty unspent. There should be proactive disclosure on the part of all government agencies on their spending on accessibility/ disability and they should solicit advice from persons with disabilities and accessibility experts who are part of the committee to review budget spending.

4. Development of appropriate technologies- we need to ensure that enough resources are pumped towards creating our own research and development community to support development and maintenance of assistive technology that caters to needs of specific groups. Open source solutions are desirable for a country like India because of the opportunity they offer for deployment, customisation and improvements.

5. Accessible Smart Cities- The Smart Cities Mission should immediately ensure that their advisory panel includes accessibility experts and that the smart cities which emerge as part of this initiative are inclusive- this is the ideal opportunity to build an accessible city, universal design should be the basic principle on which these smart cities are developed; if this is not done, then there will always remain two worlds- one for the world at large and one for persons with disabilities, and the disparity between the two will always continue.

6. Finally the most important advice I would reiterate is the inclusion of persons with disabilities across all work of the government – only then will the accessibility perspective be represented and taken into account everywhere. Otherwise we may have a situation where accessibility is either missing, or where projects are being implemented to aid the disabled, which are totally meaningless or inappropriate and only serve to waste precious resources, time and effort.

Q- What measures do you suggest for making digital accessibility available to the disabled people across the divides of class, gender and more developed and less developed regions?

Digital accessibility should be implemented at the levels of content, user interface and end user device. Hence accessibility of documents and information on the Internet should conform to standards of accessibility, such as EPUB 3.0, html etc.

User interface-WCAG 2.0 for websites is a must for any device to function effectively. Assistive software must be completely accessible. For instance, it is not uncommon to find that an ATm which is termed ‘accessible’ actually needs the input of a sighted person at some stages of the transaction while some other points are completely prompted through audio.   In such a case, the blind still cannot use this.
Schemes under the USOF and others may be used to provide devices and connectivity to persons with disabilities in rural and far flung areas and also targeting specific user groups such as women. For instance a project under the USOF to promote women entrepreneurship in rural areas by providing them with a mobile phone can easily be replicated for disabled women. They could be funded for initiatives such as operating public internet kiosks or public phone booths etc. Schools in villages could be provided with computers fitted with assistive technology (hardware and software as may be required) s that disabled children and teachers have access and exposure to technology.

Providing mobile phones to all persons with disabilities will go a long way to open up the world of books, information, communication and access to emergency services to persons with disabilities.

Common Services Centres throughout the country are an excellent way of reaching persons with disabilities and providing them access to technology. By providing assistive technology on computers there, which is not at all inexpensive if one were to use free and open source software such as the NVDA screen reader and one trained person to impart training to the disabled, who can also be a person with a disability, we can make a lot of progress in terms of both building trained capacity and providing access to technology for persons with disabilities. Private employers and organisations also have a critical role to play in promoting accessibility for the disabled.

DQINDIA Online

NGOs join issue with government on ‘divyang’ consultation spin

 

CHENNAI: Following the raging controversy over the Centre’s decision to replace the term ‘Persons with Disabilities’ (PwD) with ‘Divyang’, an RTI petition filed by a New Delhi-based disabled rights activist has revealed that the authorities had consulted all of six NGOs before deciding the change of the name. What is worse, one of those six alleged that they were never consulted as claimed in the RTI reply.

“No, we were not (consulted). We never received any letter, any invitation. We never attended any meeting, any consultation,” Javed Abibi, honorary director of the National Centre for Promotion of Employment for Disabled People (NCPEDP), said on his social media account.

The officials at the Commissionerate for the Welfare of the Differently Abled here told Express that they did indeed receive a notification, but the Centre took the decision before the State could reply.  As per the gazette notification dated May 17, the Department of Empowerment of Persons with Disabilities was renamed as the ‘Divyangjan Sashaktikaran Vibhag’ in Hindi, which attracted a torrent of criticisms from disability rights groups.

Taking up the issue, Delhi-based activist, Abha Khetarpal, a polio survivor, filed an RTI petition with the Ministry of Social Justice and Empowerment as well as PMO in late February. The Department of Empowerment of PwD’s replied that it was in consultation with various States and organisations on the issue. Noting that consultations were held with just six organisations and a few central agencies, Khetarpal added, “How is that an issue as serious like this is considered without a wide-ranging public consultation?”  Vaishnavi Jayakumar, founder-trustee of Banyan, pointed out how the Canadian government took inputs from the community before deciding to rename federal aboriginal affairs department last year.

Nomenclature not accepted

When Prime Minister Narendra Modi first invoked the term ‘Divyang’ last December, he suggested that physically- challenged people have a divine ability. However, the term ‘Divyang’ is viewed by several differently abled people and rights organisations as regressive and condescending. Says Abha Khetarpal, a psychologist, “The term is nothing more than a label which can have huge repercussions. By affording divine status to PwDs, it can lead to identity crisis in them. Persons with Disabilities shouldn’t be treated any differently than any other normal person.”

New Indian Express

Use of ‘Divyang’ will not end discrimination, access to rightful entitlements will: Disability Rights Groups

NEW DELHI: The National Platform for the Rights of the Disabled, a voluntary network has raised objection to the use of term “divyang” to address people with disabilities. The Disability rights group has written to Prime Minister Narendra Mod seeking his intervention to withdraw the notification renaming ‘viklangjan’ as ‘divyangjan’ in Hindi nomenclature of Department of Empowerment of Persons with Disabilities.

In its letter to the PM the Disability rights group draws attention to the gazette notification of May 17 renaming the Department of Empowerment of Persons with Disabilities as the ‘Divyangjan Sashaktikaran Vibhag’ in Hindi. “Disability is not a divine gift. And the use of phrases like ‘divyang’ in no way ensure de-stigmatisation or an end to discrimination on grounds of disability,” The National Platform for the Rights of the Disabled, secretary Muralidharan has said in the letter.

“What needs to be addressed are stigma, discrimination and marginalisation that persons with disabilities are subjected to on account of the cultural, social, physical and attitudinal barriers that hinder their effective participation in the country’s economic, social and political life. Mere change of terminology is not in any way going to alter this,” it added.

The disability rights group had earlier written a letter to the PM in January objecting to the word “Divyang” when Modi had referred to replacement of the word ‘viklaang’ with the word ‘divyang’ during his monthly broadcast of ‘Mann Ki Baat’ programme.

“We had pointed out in our letter that invoking divinity will in no way lessen the stigma and discrimination that persons with disabilities have been historically subjected to and continue to encounter in their daily lives. Exclusion and marginalisation cannot be addressed by using patronising terms like ‘divyang’,” the voluntary network had argued. The idea of replacing Viklaang with Divyang was presented at the launch of teh Accessible India Campaign in December last year, where the PM’s message was read out by finance minister Arun Jaitley. The usage of the word has since then evoked a mixed response from activists and voluntary organisations working with the disabled.

Meanwhile, Convenor of Disabled Rights Group (DRG) Javed Abidi said that while he has not particular preference for the word “divyang” but if he has to choose one he would prefer divyang over viklaang as the latter carries in its meaning a lot of negativity. However, he is clear that what he is more concerned about is the lack of effective measures to make life better for disabled persons. “I am not happy with the way the Accessible India program is being executed. Also what about the law for disabled persons that the government has been promising for long. It is more important to focus on issues that can give people with disabilities quality of life instead of focusing on cosmetic changes,” Abidi said.

Ambika Pandit | Times of India | May 26, 2016

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.

Despite Having Two Kids with Special Needs, This Couple Set out to Help Other Parents Like Them

Their own struggle helped them develop empathy towards others. The empathy, in turn, helped them build a solid support system for other parents of children with special needs. This is the inspiring story of K. Madhu Babu and D. Varija, a Dubai-returned couple and their children – a 9-year-old autistic son, Hem Sreesh, and a 7-year-old daughter Varhsini who lives with learning disabilities.

“Every parent builds a future for their children with education, property, bank balance, etc. In the same way, I wanted to place some responsible people around my children to support them after my wife and I are gone,” says Babu, the founder of a unique and thoughtful organization called Parents Association for Children with Special Needs (PAC).

Sreesh Mandiram, located in Bairagipatteda near Tirupathi in Andhra Pradesh, is the first school started by PAC. The seeds for the project were sown with the formation of PAC in December 2010 by Babu and Varija.

They came back to India with the mission to start an organisation for children with special needs and their parents.

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K. Madhu Babu and D. Varija with their children

“We often find children roaming on the streets, abandoned by their parents. I feel scared about the fate of my children after us, whenever I see them. I want parents to have the confidence and the assurance that our children will be taken care of even after our deaths,” says Babu.

How PAC is helping parents of children with special needs:

A get-together of parents and children

A get-together of parents and children

Here are some examples of situations where PAC has intervened, making a difference in the lives of children with mental disabilities and their parents.

A man who was an ophthalmologist died of a sudden heart attack. PAC supported his dependent and shattered wife and counselled her to look past her problems and gave her courage to focus on her child. Today, she is no longer helpless and is working in a state government hospital with her head held high. She is a pillar of support and inspiration for her child.

A mother of a girl with special needs lost her husband. Today, with the support of PAC, she’s not only looking after her family but is also taking care of the business and contributing towards PAC.

Another woman was left by her husband because of their child’s disability. She took up a job in Dubai to establish a financial foothold for her family. The child, living with his grandmother, was physically and emotionally taken care of by PAC.

PAC’s first aim has been to unite all the parents, so that they can function as one community, and support and solve each other’s problems. Help of all sorts, be it financial or personal or health-related, is provided to everyone.

The next step is to provide individual assistance, guidance and training to each child, enabling him or her to be able to be independent in the future.

Awareness camps

Awareness camps

“We have children who are mentally challenged, autistic, have cerebral palsy, Down syndrome, and are slow learners. We help children in our school to develop independently, and the first important step for this is to interact with people. We should not put them in four walls. We have a lot to do and we are working on that,” says Babu.

The Parents Association thus started conducting counselling and sharing sessions where mothers assume the key roles and share their experiences.

How the school came about:

The school building

The school building

Babu and Varija noted how education for special children was not getting its due, in spite of the fact that it is a significant pre-cursor to later independence and confidence in special children. They realised how parents, due to lack of awareness, financial support or time, are not able to impart the required educational training to their children.

Babu recalls from his personal experience with Hem Sreesh, “By the time my son was diagnosed, he was already taking special therapy in Dubai. We were getting very good results. It was Applied Behaviour Analysis Therapy (ABA). My wife diverted her career to special education and therapies. She started this because if she did a regular job, nobody would be there to take care of our children. She completed her course in B.Ed as well as Special Education in Dubai.”

Eventually, they started the Sreesh Mandiram school near Tirupathi for imparting special education, physiotherapy and ABA therapy, with the help of doctors visiting from a local super speciality hospital called SVIMS.

Physiotherapy treatment

Physiotherapy treatment

A day at Sreesh Mandiram starts with prayer, followed with physiotherapy sessions and special education lessons. The afternoon time again includes special therapies (focussing on ABA), speech and occupational therapies, and physical activities to ensure fitness.

“These children are not able to express what they are going through. When they come to the special needs school, they are trained specially on how to get on a bus, how to mix with other children, etc. For instance, my son earlier didn’t know where to go if he is hungry. But my wife has trained him to go to the kitchen if he is hungry, take the plate, put rice and whatever else he wants, and eat. He could not even handle a plate before. But now he’s okay,” says Babu.

The mothers interact with Varija who helps the ladies in forgetting their hardships and in working for the betterment of their children. She guides them on the type of treatment and government policies that can benefit them.

School activities

School activities

“According to government policies, every child is entitled to receive Rs. 500, but that’s too little. My child requires at least Rs. 2,000. So these kinds of problems are all discussed with the parents in the meeting, especially mothers. My wife, who is a certified therapist, also counsels families from neighbouring villages who come and take some training with us and go back,” says Babu.

Doctors, paediatricians ophthalmologists, dentists, dermatologists, and other medical specialists visit the school every 2-3 months and the consultations are for free.

Children here are seen as living gods and are served with love, care, warmth, and respect.

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Unfortunately, Babu and Varija lost Sreesh on December 9, 2015. At the age of 10, Sreesh suddenly got a very high fever one day and it was accompanied by fits. They took him to the hospital but he could not be saved.

PAC’s ultimate vision is to implement a lifelong supportive organisation under the Tirupathi temple trust to serve the children. We wish them the very best for this noble endeavour!