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» Got Questions? Get Answers. » EXPERT ADVICE » Ask Scarleteen » Body Image, Sexuality, and Disability (Page 1)

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Author Topic: Body Image, Sexuality, and Disability
sunnyday
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Dear Scarleteen,
First of all, kudos to Heather and the volunteers for such a great site!
I am a young woman with a history of body image issues. I have a physical disability that limits my dexterity, flexibility, and mobility. I use a wheelchair anytime I am awake.

Now that I am older and in a relationship, I am on a quest to find information and support that will help me get to know and love my entire body from head to toe. It is extremely hard to find disability-related body image and sexuality information. Can you please help me?

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Heather
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We sure can!

There's a great book called "The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain and Illness" co-authored by my friend Cory Silverberg.

Online, are you familiar with the GimpGirl community? If not, you really should be. It's an amazing place, and they also talk about and address sexuality and body image there a whole bunch. You can find them here: http://www.gimpgirl.com/

I'd also be happy to have a conversation with you, both generally and anecdotally. I don't have any mobility issues myself, but I do have a hand disability, so I may get some of where you're coming from.

--------------------
Heather Corinna, Executive Director & Founder, Scarleteen
About Me Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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sunnyday
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Thanks so much, Heather! Any information you can share would be amazing.
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sunnyday
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Hello again!
I am hoping you can help some more here. I am kind of lost when it comes to expressing myself sexually. I am also worried about developing an ED, given how shaky my body image tends to be.
Heather, maybe just hearing a bit more of your story might help. Next time I am at the library, I will look for that book.
Thanks again!
~Sunny

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Heather
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Another book you might want to look for is a book called "Body Drama." I really like it, and it's full of all kinds of images of all kinds of body parts and different ways all we women really look.

When it comes to my hand, I had two of my fingers severed when I was 7. That meant a couple of years in and out of surgeries, and many months each time of full-arm casts. It meant I needed to try and write with my left hand when I was right-handed (something I never got good at), and a lot of teasing: you know how it can be with kids, and this was also before we had the kind of disability awareness our culture is just finally starting to cultivate. In fact, a year ago I was visiting my mother, and found some of my old report cards. I was so angry to see two in there, during those years, where I got very low marks for penmanship without ANY recognition or note of WHY my penmanship sucked so bad. Crazy.

Anyway, while there were something I had to learn then relearn again, I at least came of age learning to do most things WITH my disability, so I certainly could have had it a lot rougher. (For instance, regular typing lessons don't work for someone who can't use all ten fingers, but I taught myself, so actually type faster than most people, just with a very different way of typing.) All the same, while my fingers were reconstructed so they look, for the most part, like fingers, they don't work very well, and one of them is pretty much totally useless when it comes to any kind of function. I can't feel much on those reconstructed fingers. I get some pretty crippling arthritis, and I can't do plenty of things many other folks can, like get lids securely on things (or open some of them), write with pens or pencils for more than a few minutes at a time without pain (or very legibly), and a bunch of different fine-motor stuff.

Something I can laugh about now: when I was a kid, one of my friends said one of my fingers looked like her brother's penis. (It doesn't have a fingernail or a real nail bed, and to be honest, it really does look kind of penile) That was very hurtful at the time, but when I was much older, I actually had sex with her brother and it took everything not to die laughing because, in fact, his penis really did look quite a lot like my finger. [Razz]

In all truth, growing up I was a freak in some many different ways that my disability just kind of felt like one more. There have certainly been times I felt nervous about it -- for a long time, I was worried sexual partners wouldn't want my hand on their genitals or would be grossed out by it, but that's never happened even once -- and there are some sexual things I have to do a bit differently, but they're fairly minor. And for sure, when it comes to my hands, I get the shakes sometimes.

But too, throughout my life I've had sexual partners with their own disabilities, as well as a couple who had something about them that was profoundly physically different then most other people. And for me, seeing that none of that ever phased me at all, that I just came to them the way I come to all individuals, expecting them to be individual, and appreciating them for exactly who they are, was always a good reminder that it didn't make any sense to think other people would come to *me* any differently or any more judgmentally than I came to anyone else. Know what I mean?
So, there's my opening with that: don't know if that offers you anything, but I'm glad to talk more about it, or talk about the ways you feel self-conscious and nervous, or about adaptations you may need to make with sex.

You say you're worried about developing an ED: do you feel like you've started with those behaviors?

[ 01-23-2010, 01:10 PM: Message edited by: Heather ]

--------------------
Heather Corinna, Executive Director & Founder, Scarleteen
About Me Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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sunnyday
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Heather,
Thanks again for your prompt and detailed response. Sorry it has taken me so long to respond.

It makes me feel better that Im not the only one who has dealt with disability-related relationship challenges.


As far as my body image and ED concerns go, I will try to break it down for you as best I can. I feel like I have a very poor body image stemming from several things....
1) Other people making a big deal about my weight
2) My physical deformities themselves
3) A lack of control or independence in many areas of my life
4) My propensity toward perfectionism

1) Because I can't bear enough weight to transfer myself, I have to be lifted- anytime I got above about 75 lbs people would start saying things.
2) I have lordosis, which makes my stomach protrude and look big, and I have almost no muscle tone in my abs or my thighs, plus I sit all day and my thighs look huge and pudgy.
3) There's only so much I can do without other people involved.
4) I feel like I have to do better, work harder, and be prettier than somebody without a disability just to be even close to on the same level.

Here is what I know about my behaviors. I tend to skip meals sometimes. Often its because Im simply not hungry, but other times I have different reasons. I feel like I'm in control of my body when I chose to skip meals for the purpose of making my body look different. When I am able to, I love the feeling I get from working out, as that also gives me some control over things.

I have tried many times to bring these things up in different professional contexts (multiple counselors over the years) and nobody seems to get it.

As far as my sexuality goes, I really want to get to know my own body, where things are, and what feels good, but given my fine motor issues, I dont really know where to start. I guess Im also worried about positioning and pain when the time comes to be with a partner.

Thanks again,
Sunnyday

[ 03-06-2010, 12:18 PM: Message edited by: sunnyday ]

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Heather
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I have to confess that I'm a bit flabberghasted none of your counselors have understood the element of control with your ED: that's something well-understood by professionals now to be pretty much THE major issue with EDs. In other words, controlling eating as a way to feel in control is highly typical.

Mind, maybe your counselors know that but haven't quite yet gotten that with your disabilities, control of your body would obviously be a much bigger issue for you than most. Might you try bringing that up?

Do you have an attendant?

--------------------
Heather Corinna, Executive Director & Founder, Scarleteen
About Me Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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sunnyday
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Heather,
Gosh, you're quick.
To be clear, I have never officially been diagnosed with an ED.

Yes, I do have attendant care.

Also, I am not in any sort of counseling right now. If you need more information, let me know.
Thanks again!

[ 03-06-2010, 12:29 PM: Message edited by: sunnyday ]

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Heather
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So, sounds like you might need to talk more about the eating.

With your attendant, have sexuality issues ever been discussed? I ask that because for plenty of disabled people with attendants, aid with masturbation (such as by placing a toy or putting something on: for example, a remote vibrator you don't have to hold with your hands might be a good option for you) is part of those services.

Obviously, some people are comfortable with that and others are not, but you're certainly outside the age where there would be an issue of needing parental permission or anything like that.

--------------------
Heather Corinna, Executive Director & Founder, Scarleteen
About Me Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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sunnyday
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I'm not currently in a situation where I can ask attendants about those matters, but you are giving me great food for thought. What do you mean by a remote vibrator?

And yes, the eating and body image issues are a big deal.

Thanks so much.

Scarleteen is a great service!

[ 03-06-2010, 12:46 PM: Message edited by: sunnyday ]

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Heather
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There are vibrators which work by either just attaching a device to the pelvis with straps (and you could modify other vibrators this way by using dildo harnesses, or even your own underpants). There are even undergarments that have a pouch for a small vibrator that can be inserted into the garment, then either turned on manually or by remote.

--------------------
Heather Corinna, Executive Director & Founder, Scarleteen
About Me Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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sunnyday
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Thanks...
Back to the body image issues, any advice?

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Heather
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Do you have a counselor right now?

--------------------
Heather Corinna, Executive Director & Founder, Scarleteen
About Me Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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sunnyday
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No. From past experience, I'm really hesitant about it.
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Heather
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Okay. Do you want to talk about how to get one that's a good fit for you? If so, we could do that.

Were you ever able to get over to gimpgirl and check it out? One thing I think might help a lot is just having some kind of community of other women who have struggled with this like you have you can talk with.

Of course, it struck me this morning that I really wanted to have some sort of nice collection of images of disabled women to send you to...but couldn't think of one. I don't know about you, but one way I work out some of my own stuff is to create projects where I and others can do that at the same time, so if that's of interest to you, I'd be happy to help get some sort of tumblr organized for that.

One last thing I want to add is that I think sometimes there is a hidden benefit for the marginalized in sexuality, which is this: for people who are NOT marginalized, it can be a lot easier for they and their partners to come to sex without realizing that for it to be good, it really needs to be about making it unique for everyone involved. I know that the idea of talking to partners about adaptations and adjustments can feel very daunting, but at the same time EVERYONE who wants to have good sex should be doing so, and those who think they don't have to can really miss out.

So, asking for those things is not problematic and should never be: know what I mean? It might also help to remember pretty much everyone always needs to, just not everyone has to.

--------------------
Heather Corinna, Executive Director & Founder, Scarleteen
About Me Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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sunnyday
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I sure would!

I did get to their chat once but haven't been back since-I think it was a bit overwhelming being new and many of the participants being substantially older than me. I intend to go back soon, though.

I haven't heard of Tumblr, I'll have to check that out!

Thanks again for your assistance!

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sunnyday
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Heather,

On a related note, I read one of your articles on body image and as always, it was quite good.

I am concerned going forward in my relationship that my unhealthy body image may throw a curveball in things, because he has a much more positive view of my body than I do. I'm not sure how to reconcile the two without sounding like I'm constantly begging for reassurance. I don't want to hurt him by asking him to explain why he finds me attractive.

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Heather
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Well, it might help to realize that you probably really shouldn't be asking him why that much. I'm sure he'll tell you when the spirit strikes him, if and when he can even articulate that. It's often actually pretty hard to explain why we find someone attractive because people aren't just a collection of parts we like, but are a whole picture, all parts together. Know what I mean?

I think if you feel like you need constant reassurance from a partner that they find you attractive, it can be a signal that you might not really be in the right headspace yet for an intimate relationship with someone else, and/or will need to be doing your own work on that -- like with a counselor or coach -- during the relationship so that you're not basically looking to a partner to do that work with you.

--------------------
Heather Corinna, Executive Director & Founder, Scarleteen
About Me Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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sunnyday
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Thanks!
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sunnyday
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Hey Heather,

I wanted to give you a quick update and maybe go a bit farther in this conversation when you get a chance.

My issues have not resolved completely and I recognize that I have more work to do, but I feel like I'm in a better place/stage in this process.

Thanks so much for the suggestion to check out GimpGirl!

I have spent quite a bit of time interacting with the members at GG and they have been very kind and helpful.

I feel like this isn't just for me and my relationship. I believe there are a lot of teen and 20-something individuals with disabilities in similar situations who could benefit from advice, articles, Tumblr projects, discussions, etc regarding the intersections of body image, disability, and sexuality.

I would be more than willing to assist Scarleteen in any future efforts in this regard.

Thanks again for all that everyone does here!

-Sunny

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sunnyday
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Hey Heather,

I wanted to give you a quick update and maybe go a bit farther in this conversation when you get a chance.

My issues have not resolved completely and I recognize that I have more work to do, but I feel like I'm in a better place/stage in this process.

Thanks so much for the suggestion to check out GimpGirl!

I have spent quite a bit of time interacting with the members at GG and they have been very kind and helpful.

I feel like this isn't just for me and my relationship. I believe there are a lot of teen and 20-something individuals with disabilities in similar situations who could benefit from advice, articles, Tumblr projects, discussions, etc regarding the intersections of body image, disability, and sexuality.

I would be more than willing to assist Scarleteen in any future efforts in this regard.

Thanks again for all that everyone does here!

-Sunny

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sunnyday
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oops, sorry about the double post! My browser went a little crazy!
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Heather
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No trouble!

I'm here now if you want to talk more. So glad GG has turned out to be such a great place for you: it's such a wonderful space, I think.

And if you want to talk about doing things like writing some content about all of these intersections, I agree: I think a whole lot of folks could use that!

--------------------
Heather Corinna, Executive Director & Founder, Scarleteen
About Me Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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sunnyday
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I'm here, too. Thanks so much!

Let's see.

As far as professionals that might be able to help, I tried your spiffy new Find-A-Doc and there aren't any providers of any type in my zip code (yet).

And when it comes working on content, I'd love to discuss that some more as well.

Finally, I'm up for talking about what I am experiencing and thinking through things with you and other staff whenever you have the time and inclination (no rush-other users have more pressing concerns).

Thanks again!

Take care,
Sunny

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Heather
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Sure thing, feel free to fill me in!

In terms of the provider, you're looking for a counselor, right? Do you have insurance?

--------------------
Heather Corinna, Executive Director & Founder, Scarleteen
About Me Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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sunnyday
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Yes, a counselor. Insurance...Yes and no...not private coverage, if that's what you mean.

In terms of collaborating with you and the staff/volunteers on content, if that's something you'd like, what kind of information do you envision?

And to fill you in, I've been eating more regularly than before. While I know I have work to do in embracing my whole body and being, there are certain aspects that I feel much better about.

[ 01-31-2011, 11:19 AM: Message edited by: sunnyday ]

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Heather
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Per writing something for/with us, how about you drop me an email? There's a link at the bottom of the page to contact us, and then we can chat that up!

Sounds like you've been making some progress: that's so great!

If you have healthcare coverage, do you know what it covers in terms of counseling?

--------------------
Heather Corinna, Executive Director & Founder, Scarleteen
About Me Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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sunnyday
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Will do!
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sunnyday
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Heather,
I'm having some more issues with body image. Should I start a new thread or continue here?
Thanks,
Sunny

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Heather
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Whichever you like, sunnyday. I'm happy to talk more with you regardless. [Smile]

--------------------
Heather Corinna, Executive Director & Founder, Scarleteen
About Me Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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sunnyday
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Thanks!
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sunnyday
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I'm ready to talk. I'm not sure where to start, though.
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Heather
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Want to just fill me in on what issues have been coming up for you, and what you've been doing to try and improving your body image lately?

--------------------
Heather Corinna, Executive Director & Founder, Scarleteen
About Me Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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sunnyday
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Let's see.

I feel fat and that feel that I look fat (especially my thighs and my stomach).

I've been attending online support meetings at Gimp Girl and looking around online for anything that might help.

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Heather
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Okay. And is fat something you see as a negative?

If so, can you talk to me a little about how you feel about fat being something negative?

Same goes for your stomach and thighs looking big to you, which you've brought up before. Obviously, you feel that's a bad thing. Can you suss out some of why?

--------------------
Heather Corinna, Executive Director & Founder, Scarleteen
About Me Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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