Come on baby, light my fire4 min read . Updated: 21 Mar 2015, 06:56 PM IST
Sohaila Abdulali on sexuality and disability
The woman is in her 20s and hopes to have a husband some day. But until she attended a workshop conducted by Nidhi Goyal, she had no clue about penises. Are they round, flat, huge, tiny, slimy, fuzzy? She had never touched one, never seen one, never glimpsed a cartoon or a photo or a shadow on the bathroom wall. She was born blind and it had never occurred to anyone that she might care.
How do you know your period has started if you’re blind? How can you tell that your partner is turned on? If you’re paralysed from the neck down, can you still have an orgasm?
Nidhi was diagnosed at age 15 with retinitis pigmentosa, an inherited disease that involves the slow, progressive, unpredictable degeneration of the retina. By the time she was 21, she had lost all functional vision.
“I feel fortunate that I have seen for a while, because the ideas still remain with you. If you say something is pink, I know what you mean by pink. On the other hand, people who are born blind develop their other senses more than those of us with acquired blindness. I have had to work to develop my tactile senses." I have never before heard a disabled person tell me seriously how NOT starting out life disabled is a disability, and I’m fascinated.
Nidhi is hot stuff, as far as I’m concerned. She might lack sight but makes up for it with truckloads of hard-won insight. She was one of the masterminds behind the website Sexualityanddisability.org, produced by Point of View and CREA, two non-governmental organizations with which I have had a long association.
The website explains itself thus:
“Welcome to www. sexualityanddisability.org, a website that starts with the premise that women who are disabled are sexual beings—just like any other woman."
Women who are disabled are sexual beings just like other women? Don’t these ladies know that in our country women are barely considered sexual beings, and now they want to talk about the sexual rights of women with one leg or no ears or a face burnt off by acid or a brain not like most of those around them?
Yes, they do. And it’s worth listening to them.
When Nidhi was diagnosed, her father’s friends (“Educated people!" she explained. Why do we persist in the delusion that educated people are more enlightened?) advised him to hide her disability until he got her married off, otherwise nobody would have her. That way he could make her somebody else’s problem. Luckily, this column is not about oppression, but about empowerment. Her father thought that was ridiculous and offensive at every level, and did nothing of the sort. Nidhi’s is not a tale of family rejection and hand-wringing victimization. She carried on, she carries on.
“I have all sorts of friends—the fantastic ones who supported all my college crushes; and some others who would only recommend men with rock-bottom incomes for me when we’d check out matrimonial sites. According to them, less money meant a disability and they would match it with mine. They assumed nobody with means could possibly want me. I don’t think they were particularly trying to hurt me or put me down, but it’s just so embedded!"
When Nidhi starts talking about the way a disability acts as a filter through which people always look at you, it sounds very familiar. All of us know about filters and use them all the time. We’ve all been someone’s gay friend, fat friend, short friend, Indian friend. We all know what it is to be defined by just one thing. If Nidhi fails her documentary film class, it’s because she’s blind, not because she just failed, like any student. “Any student has the option to fail," she says. “Why not me?" She topped her class, by the way.
Added to the prevailing stigma and ignorance about both blindness and disability in general, there’s a distinct discomfort with the idea of disabled people having, needing, or deserving sex. The creators of Sexualityanddisability.org came out swinging in this regard. Starting with a basic understanding of bodies, they tackle everything from masturbation to giving birth. Here’s where the Internet shines. Where else could you find this information, perhaps discover, to your delight, a link to “The Mad Spaz Club: Where all the cool wheelchair people hang out"?
Nidhi ran a workshop for visually impaired women and men in Mumbai. It was a day-long event, with 30 attendees. They passed around mannequins, talked about condoms, safety, and myths and facts about sex.
Now she and Point of View want to take this work to the next level. They are about to embark on a crowdfunding campaign to raise money for taking the work into homes and schools, and helping disabled women and girls reach their potential, sexual and otherwise. This can only be good for the disabled community, and an amazing gift to society at large. The more citizens can participate fully in life, the better off we will all be.
I recently watched The Way He Looks, a beautiful Brazilian film about a blind gay teenage boy. I was struck by its universality. Leonardo, the main character, was as confused, rapturous and bursting with hormones as any of us at that age. If it’s not visual impairment, it’s something else: In the crazy awkward chaos of adolescence, we are all groping in the dark to find meaning and to discover ourselves. The blindness in the movie is real, but it is also a metaphor.
The blind leading the blind isn’t what you thought it was. There is power in difference, and there is pleasure. Maybe it’s time to open our eyes to both.
Sohaila Abdulali is a New York-based writer. She writes a fortnightly column on women in the 21st century.
Read Sohaila’s previous Lounge columns here.