Sexuality & Disability: An Interview with Marika of SexyDisability

marika

Within the feminist, body positive and sex positive movements, disability is often omitted or oversimplified in favor of other aspects of identity.  I spoke with Marika, sexuality and disability advocate, Druid and creator of YouTube channel SexyDisability. Marika and I had a long conversation about relationships, representation, confidence and connection within the realm of sexuality and disability.  

G: What inspired you to created YouTube videos on sexuality and disability?

M: It was my own personal experience, and the assumption that individuals with disabilities either couldn’t have sex, aren’t interested in sex, or aren’t sought after for sexual experiences.  

A key turning point for me was seeing a young woman who looked just like me, who had cleft of the palate, running for Miss Canada. As a young women growing up, I thought that my appearance made me automatically less attractive than anyone else.  I would have never imagined that someone like me, who had those scars, would be in a beauty pageant. My own physical difference is Popliteal Pterygium Syndrome, which includes cleft lip and palate, and webbing on my legs and hands that has had surgical intervention.

G: So seeing representation of yourself brought you to realize that you are beautiful.

M: Yes; and seeing her [run for Miss Canada] made me do the [YouTube] channel.

 

G: How do you view the body positive and sex positive movements in relation to folks with disabilities and physical differences? How do you think it serves them and how do you think it does not?

M: This has been on my mind and heart a lot. I’m currently not seeing the body positive movement really embracing people with disabilities to the degree that they’re embracing other parts of our society, such as plus size [people] or women of color. Folks with disabilities are waiting for our turn, in some respects.

My other perspective on the body positive movement is that it’s a little awkward for me, someone with a disability, because there are simply parts of my body that I don’t think are attractive, and that’s okay. I don’t think attractiveness is necessarily the most important part of sexuality to me. I’m more interested in functional sexuality.  I really appreciate how different types of bodies are being celebrated, but I’m okay with not loving every part of my body. There’s also the question that, if someone doesn’t find themselves attractive, can they still be an empowered sexual being? Is that allowed?

 

G: That’s an important question.  Expanding from that, what is the relationship to attractiveness and empowerment? Are they mutually inclusive? Is it possible to have one without involving the other? So much of the body positive movement is declaring, “You are attractive, regardless of body shape, size or color,” but what if we removed attraction from the conversation and asked why that has to be a factor?  

M: [Attraction] is definitely an important part, but [it’s] not the whole movement.  I was listening to a podcast recently and the speaker said, “I’m just an average woman; I don’t look like a supermodel or anything,” and that should be fine.

G: Attraction puts a lot of pressure on people, and it can feed into narcissism. Our culture is very consumerist and is greatly based on vanity, and on thinking that you’re either the most attractive person in the world, or you’re not attractive at all. The idea of restructuring that mentality, taking attraction out of it and asking, “Who are we without physical attraction?” is a testament to how much one loves oneself as a whole person.

M: As women, especially, our culture uses women’s sexuality to sell objects. In a sense, [women’s sexual attractiveness] is overrepresented.  Yes, a woman can be considered sexy, but can we please talk to women about how to enjoy themselves [and] how to pleasure themselves? I don’t understand this emphasis on women’s appearance only as their sexual nature. We need to be helping men learn how to pleasure themselves, and women as well. If you only focus on the physical, it can be a really shallow view of sexuality. It’s not as spiritual.

G: One’s perception of one’s own attractiveness can also change by the second.  If one’s sense of self love and sexuality depends on attractiveness, that’s a very fragile factor to depend on.

M: Exactly; and what’s popular in terms of what is considered an attractive body or face can change. We also change with age, and women who are older aren’t viewed as attractive, [even though] they are still equally as attractive.

G: Taking attraction out of the equation, and instead building a foundation for one’s self-love and sexuality on something stronger, is a powerful notion.  

M: Right. Physical attraction is important and we don’t want to demonize it, but we don’t want to make it the most important thing [either].  People consume beauty products, like makeup, lipstick and spanx, [and through these products they] can take on this different persona. But if you have a physical disability, there’s only so much you can do to “fit the mold.”  

 

G: Instead of attraction being the main factor, what would you suggest people focus on primarily, for their foundation of sexual freedom and self love?

M: What are your own sexual desires? How do you want to be, sexually, in the world? Do you want to wear a sexy outfit? What fantasies do you have? What senses do you want to highlight in your sexual play besides sight: touch, scent, hearing or smell? What kind of relationships do you want to have? What kind of self-pleasure do you want to have?  [And] if you have some sort of physical difference, that [is] something you will need to be tender with yourself about.

 

G: What would you like to see more of in the body positive and sex positive movement in relation to representation of folks who have disabilities and physical differences?

M: It may sound counter-intuitive, but I’d like to see more images of people with disabilities; someone with a physical difference being a romantic lead in a movie, or in an ad campaign.  I’d like to see people with disabilities represented with romantic interests in a sexual way that’s not perceived as fringe.

G: Or fetishized; but rather, normalized.

M: Yes.  That’s a big problem with sexuality of people with disabilities.  They can be infantilized: either seen as too pure, or [as] someone who needs a lot of care.

G: As someone who can’t be sovereign and dominant; rather, someone who needs to be a passive participant?

M: Yes; or seen as “cute” or “sweet.”  

 

G: What would you like to see in contrast to that representation of disabled folks as pure and passive? What kind of sexual identity would you like to be more visible for these folks?

M: I’d like to see people with disabilities being seen as strong [and] participatory.  I’d like to see people who are relating to people with disabilities to be nonchalant, and [to treat] them like normal people with normal desires who are worthy of exploring sexuality with.  

Society does not think that people with disabilities are worthy of having a partner.  If they’re already with a partner, [society is] concerned that they won’t find a future partner, or [that disabled individual need] to find a partner who also has disabilities, because no one else would want to be with them.  [Society does not see] the possibility that someone without a disability would like to be with someone with a disability.

 

G: In regards to sexuality and spirituality, how does sex and disability intersect with spirituality? What does that intersection looks like?

M: Going along with our conversation earlier about our consumerist culture, when sexuality is seen as an outward physical manifestation that can be commodified and sold, people who are disabled are left out of that equation.  They aren’t able to add up on a physical level, and sexuality [that is] only focused on the outer appearance [is robbed] of its spiritual power and significance. In addition, if people with disabilities are seen as weak or powerless in a sexual sense, then they aren’t able to feel empowered sexually.  [Thus,] they aren’t able to feel empowered as a spiritual being, sexually.

There are also some spiritual traditions that see disability as a punishment for past life ill-doings, rather than as a powerful journey towards a spiritual path.  There are some traditions who use prayer or crystals to “cure disability,” which is problematic because it’s emphasizing that the disability is something that needs to be cured. Wrapping that into spirituality is dangerous and disempowering.

 

G: I agree; it’s extremely disempowering and insensitive to pathologize disability as an indication that, karmically, someone is a “bad person” or needs to make reparations. Disability does not translate to something spiritually negative.

Following up on that, are there any aspects of spirituality or spiritual practices that you would suggest for disabled folks who are looking to foster confidence, empowerment and positive representation?

M: It depends on the person. Brian Froud’s faerie oracle decks have body types that are nonstandard, because they are fairies, so they have different shapes which is empowering for me. I sometimes find that representations of spirituality are body-typical, because, I guess, goddesses are supposed to be “hot,” (laughs) and only crones are supposed to not be “hot.”

G: That connects to the value of attractiveness we discussed earlier. In that mindset, if a goddess isn’t perceived as “attractive,” then perhaps she’s not as worthy of worship.  Within that same mindset comes the fear of the hag, or crone goddess, because of her appearance.

M: I actually just took all the neurotypical women off of my altar and put up some crones, because I needed some different energy: of powerful women who don’t appear [aesthetically] perfect.  In my own work, I’m exploring the archetype of the crone. Not to say that being physically imperfect is something that should be relegated to old age, but it’s an aspect of it: the woman who defies this need to be desired by men in order to be seen as valuable and powerful.  

[I’m exploring] the fairy archetype too, but everyone’s practice is unique. Spiritual practice in general is really helpful, because looking at a different paradigm, away from consumerist culture, is really healing in and of itself.  [Spirituality] values you not just for your appearance or your work ability, but values you for your character and the way you move ethically in the world. Building relationships with others and with nature, and building alternatives to consumerist culture [are also important].  

 

G: Are there other areas you would like us to cover in this interview that we may not have covered?

M: How society at large can be inclusive to folks with disabilities, and how a body-typical person who is a friend of someone with a physical disability, or who wants to date someone with a physical disability, can be supportive of that person.  What to ask and what not to ask. How to respect someone who has a physical disability (a friend or partner) in a sexual sense.

 

G: So how would we address that?

M: If you are a friend of someone with a physical difference, always make sure you include them in the conversation and not assume that, because they have a physical difference, they’re not interested or don’t have things to share about sexuality.  A lot of people think that folks who have a physical difference are virgins. People with physical differences get asked a lot of odd questions, like, “Do you have sex?”, “How do you have sex?”; and that is an abrasive way to ask that.

 

G: Is it more a matter of  not asking those questions because they’re abrasive, or asking in a different way? How would you approach it?

M: In the dating arena, sometimes people without physical differences are interested in [asking those questions], but people with physical differences want to be seen as a whole person.  They want to be appreciated for all their different interests. So I think that question is better to be approached once you get to know someone, and once you’re closer to them; and it will often come up anyway. But if you bring it up right away, it can be seen as, “Oh boy, I have to give another medical lecture for another person in my life.”

G: [Asking those questions] instantly isolates the sexual aspect in a way that could feel alienating, in the sense that someone is only viewing the sexual aspect.  Just like if someone approaches another person in any situation and immediately asks something sexual; it’s not okay.

M: And the same goes for [asking], “Hey, what’s wrong with you?” That is asked a lot, and it’s not your business. For people with physical disabilities, their most vulnerable part is out in the open for everyone to see, and it’s a little too intimate to ask that right away. It’s important to see someone as a whole person before diving into the most “Dr. Phil”-type questions.

G: Right. You don’t immediately ask someone invasive questions.  Again, normalize language and don’t isolate a certain aspect of a person. We’re all different, but we’re all the same as well.

M: And if it came up in a dating relationship, depending on the type of physical difference, it may or may not affect the sexual arena.  But instead of asking “How can you have sex?”, a better question would be “What do you like in bed?” or “What are your preferences?”.

G: Because sexuality, at its core, is mental, emotional and spiritual. The physical is simply the individual’s manifestation of what’s going on in the head and the heart.

M: And if people find themselves uncomfortable or bothered by physical differences, it’s important to ask why that makes them uncomfortable.  

G: Right; unpacking our views on difference.  Rather than trying to change another individual, we should examine ourselves and why we feel the way we feel in regards to difference.

M: I’ll give you an example from two dating experiences I had. There was one experience I had with a guy and we went out to dinner, and he asked “What’s wrong with your mouth?” How do you answer that? And then I had another experience on a date, where the person I was out with, very innocently said, “Oh, you have four fingers on your hand.  That’s really cool! That’s awesome,” and that’s a better way of looking at it. The first person saw it as a negative, and the second saw it as a positive. Maybe risky to bring up on the first date, but he pulled it off because he wasn’t uncomfortable with my physical difference. He saw it as a positive, but also didn’t dwell on it.

 

G: Are there certain aspects of your current relationship that you really appreciate in terms of this subject?

M: The partner I’m with now really loves my differences, and finds them beautiful.  

 

G: What are the main takeaways, to wrap up this topic?

M: Not having it be the first thing you bring up, is always great.  Instead of treating someone like an oddity, treat them like a person, and the disability is one part of their experience.  Keep in mind that people with disabilities and physical differences may be used to people bringing it up, so they may like to have a break from that.  Follow the lead of the person with the physical disability. And if you want to ask a question, frame it in a more open way. For example, “What do you like to do in bed?” instead of, “What can you do in bed?” We’re all human; let’s just have good relationships together.  

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Further Resources:

 

Marika’s Youtube Channel, SexyDisability:

https://www.youtube.com/channel/UCcaHEFKbhbijtmn0lEFXt4A

 

Body Positive Movement and Disability: 

https://www.buzzfeed.com/lucywebster/how-feminism-informed-my-identity-as-a-disabled-woman

 

Disability and Sexuality Playlist:

https://www.youtube.com/playlist?list=PLCnX7UJ5bevUYPxxk-e2E2EvShUTAT-IC

 

Disability and Sexuality Awareness Campaign:

http://www.enhancetheuk.org/new-sex-disability-page/

 

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