Dating While Disabled and Dating Someone Who's Disabled

A while back I read an article, a very annoying article, called "I Wouldn't F*** Me: Dating as a Gay Disabled Man." I know writers rarely have control over the headlines that get stuck (I originally mistyped suck, which works equally well) on their pieces. I know that piece was probably titled by some straight normate, but really? REALLY? I'm a queer disabled human, and I know there are a lot of disabled folk out there, queer and unqueer who are ashamed and in denial and self-loathing. I've been that person. It's hard being that person; it's soul-killing. That's a huge part of the reason I'm dedicated to celebrating my wholeness and the wholeness of disabled folk in a world that sees us as incomplete. And that title is just, lord, it's awful. I would f*** me. I DO. It's a joyful, celebratory, freeing thing seeing myself as beautiful and worthy and hot but also way more than hot.

So today I'm going to talk/write about dating while disabled and some things that have been incredibly helpful and healthy for me. If they don't work for you or don't feel like you, that's cool. Take what you like. Throw away anything that doesn't feel like it fits. Lord knows none of this is one size fits all.

I'm always very upfront about my disability. It's right at the top of my OKC profile where I mention that I'm not into hiking or cultural appropriation. Mentioning it straight of the bat saves time and precious, precious energy. I don't have to worry about what prospective partner will think. I don't have to make a big reveal of it later. It's also a great exercise in sifting the wheat from the chaff. The people who see disability as a big, scary, horrible thing that's going to keep them from dating me are generally not people I'd ever want to get involved with. They're cowards. They're fools. They're jerks. I'm not interested.

When someone gets weird or acts ashamed about my disability, they get the door. I'm not as good about this as I want to be, but I get better all the time. I've got years of that ingrained "you need to be very very very grateful that anyone is willing to be around you at all because people who stick around when you're disabled are the holiest of martyrs" BS filling up my brainspace. Years. So this is hard, and I suspect it's hard for everyone. I woke up from a seizure to an ex who was yelling at me (later noticed that this ex was always using the time just after seizures or when I had a migraine and couldn't fight back to lay into me about my flaws). I have a friend whose ex would get angry about her loss of bladder control during seizures. A lot of horrible, abusive people will use disabilities against us. They'll tell us no one else will love us. They'll used societal ableism to prove their own saintliness. They'll use us. They'll hurt us. These aren't good people. These people aren't always partners. They can be family or friends or caretakers. Avoid these people. If you have to take a few years off dating to work on self esteem and boundary issues (because a ton of folks think they can run roughshod over our boundaries), do it. Mental health is more important than dating. Love yourself first.

Community. Community community community. Disability can be incredibly isolating. I spent my twenties feeling like the only woman with epilepsy on the planet. I lived in the armpit of Idaho. I barely knew other people with disabilities, let alone other people with epilepsy. I didn't know much of anything about epilepsy. I couldn't find groups dedicated to epilepsy online. Most blogs I found barely had a post. I felt so alone. But I found other communities that served to tide me over for a while. Feminist groups, queer groups, nerdy groups. I found other people. I moved out of Idaho (it was time--rural life isn't the life for most folks with disabilities. We need a lot of stuff that is only found in urban areas). In the past few years I've found disability groups and learned a ton about academics surrounding disability. I've gotten comfortable with my disabled self. I've accepted that I will probably never be cured and I'm ok with that. Most of my friends are disabled. I think we gravitate to each other. Sorry, normates, you don't get it. This club isn't for you.

Another reason community is essential is that disability is a often a bodily thing--bodily in a way that society might think of as embarrassing or disgusting or shocking. I have no shame about body processes. One of the disability groups I belong to probably is probably 75% poop stories. I've just come to the conclusion that poop is a huge part of disability. If your disability doesn't make or prevent you from pooping, one of the meds you take will. Just about everyone has a "pooping during a hospital stay" story (I have so many. They are so funny. They are so gross). We can also give the best recommendations for laxatives or diarrhea meds or really any other meds. We deal with so much body stuff and often we've had other people deal with our body stuff. It seems normal to talk about and weird that there are people who never, ever talk about these things.

And now part II:

If you are dating or planning on dating or meeting or viewing the dating profile of someone who is disabled and you are not:

Ask yourself if you think you can handle dating someone who is disabled. If you don't think you can at this point, don't start in the first place. You should probably do some reading about disability and you should probably understand that most people are at one point or another disabled (that includes you). But if you just aren't ready, don't start. You are wasting our time. Just like anyone, we'd prefer to be loved by someone who thinks we are lovable.

If you've started dating someone who is disabled and now your brain is exploding from fear and I can't handle this! I didn't understand that disability meant disability and now I have to deal with disability shock, be honest. Be upfront. Don't ghost people, for goodness sake. Don't condescend. This isn't our first rodeo, I can guarantee you. I had one woman break up with me by saying she couldn't handle the disability thing (good start! I love honesty!) and end it by saying that I'd be ok because I have poetry (What? Wait. What? Poetry is a good thing, but has nothing to do with a breakup. Unless it's poetry about a breakup). Remember that we are smart enough to see through that BS. It's not a huge honor that a non-disabled person chose to go on a few dates with us.

If you're in a relationship and your relationship is awesome and you love your partner, that's so cool! Congrats! Relationships are great. Loving partners are great. All relationship advice applies. If either of you feels hurt, acknowledge the hurt. There are awesome books about sex and disability if your relationship is sexual. It's always cool to learn about your partner's disability, but don't talk over them about it (ablesplaining). They're the expert on their body. Avoid ableist slurs and any slurs at all because slurs aren't cool and are hurtful. Remember that you're both human and you're both allowed to have bad days. Neither of you is allowed to be abusive. If you end up breaking up, I'm sorry. Breakups generally suck.

That's it. That's my advice. I hope any of it was useful.

I'm not talking about disability today. There's more important stuff for me to address with others and within myself. Our nation is suffering. We've got this wound that's festering and sick. We've got this wound that needs to heal, but most of us would just prefer to ignore it. Most of us pretend it isn't there, give the wound different names, blame it on something else, and become complicit in the sickness.

A few days ago a twenty-one year old white man walked into a historically significant black church, prayed with the black worshippers, and then shot nine of them dead. I will not name that white man. I will not make the excuses that are made on the regular so we can pretend that this is an isolated incident, some crazy with a gun. NO. This is the bloody result of a racist nation that refuses to acknowledge or name its racism. White folks, we have blood on our hands. As much as we cry for incidents like this--and I know a lot of us do cry and feel oh so sad--we are not doing enough. Our tears are selfish. Our tears are meaningless. They are not action. They are not introspection. They are not change.

We need to stop feeling bad in that self pitying way, that helpless way. We need to investigate ourselves. I've been asking myself a lot of questions these past couple of days. I've been asking myself about my own prejudices and my own learned racism. I know it's there. I know I learned stuff growing up in the whitest town in Idaho. I know I've got to unlearn so much that I learned in school, at church, from my neighbors, and even sometimes from my own family. I know I've got to ask myself these really hard questions that sometimes make me ashamed, and I've got to realize that my shame is useless. My shame is not action.

I've got to understand my white privilege. I've got to understand that the ways in which I'm unprivileged don't counteract the privilege I've got from my skin. I've got to use that privilege for good. I know that I cannot and will not be a white savior, but I can be an ally. I can be useful. I can act. I can ask questions. I can look at the people on the ballots. I can research. I can write. I can go to meetings when I'm healthy. My body may not always let me do what I'd like to do, but I can try to be useful. I can try to help excise this ugly wound.

We need to look at our history and name the ugly racism, recognize it for what it is. We need to look at our present and name the ugly racism, recognize it for what it is. We need to let our leaders and our judges and our police--our police especially--know that we will not accept racism. We will not let them blame the victims any longer. We need to recognize our participation in this--for even standing by and allowing these acts is participation. We need to acknowledge and make amends. We need to ask forgiveness. We need to act. We need to act. We need to act.

Disability is Loneliness

Here's the thing: disability is loneliness. It is isolation not just in illness and alikeness, but in solid, tangible fact. It is solitary confinement. Friends stay for a while. They offer their help. They are kind. They hope for the best. But when the best never happens, when the need goes on and on and on, they disappear. It is not a flaw in them. It is a human thing. No one can help out 24/7. No one can be there and understand and fill that well. There is no way to be less alone. There's nowhere to place blame for that.

I interact more with the mailman and the pizza guy than I do with anyone else. I'm too tired to cook. My legs ache. I see a human face while I fill in a tip and sign a receipt and ask for peppers and cheese. It's worth twenty dollars, right? I can make the pizza last three days, and three days of meals plus a human face and a human voice is worth twenty dollars.

I'm glued to my computer or my phone. Too many people complain that technology separates us. Satirical cartoons show people staring at phones instead of talking. There isn't anyone to talk to anyway. My friends live on my computer or my phone. Just past another screen there is a whole life out there and I just need to consume it, but I can't really. Second hand is good enough for now. Maybe someday it won't be second hand. Maybe someday I'll find a town where the buses don't suck and I'm not too tired and I'll make some friends and I'll do stuff that doesn't involve staring at a screen to see what everyone else is doing. Oh god.

Someday I'll find a way to repay and be useful and pay everyone back for every time they've helped. Right now I can only apologize for my uselessness. I am sorry. I'm sorry and I'm lonely and I wish I weren't this thing. I wish I could be the friend you all deserve and I wish I didn't need so much or have to ask for anything. I'm sorry.

Resources: Cleaning and Cooking

Epilepsy usually comes along with a few other disabilities of the brain (ADHD, depression, anxiety, etc), which can make life with epilepsy more difficult. I'm just going to post here some basic resources that have helped me get by and/or saved me time and stress. I intend to have a series on this because having resources and help is so freeing.

First and foremost: Unfuck Your Habitat

Yes, there's obviously some swearing, so this may not be a resource for the easily offended or the delicate of sensibilities. But this tumblr (and the app--there's an app!) has helped me so much with cleaning and staying on top of chores. There's nothing else quite like it. It encourages taking small steps with cleaning every day (so stuff does actually get done), but discourages marathon cleaning sessions (so you don't wear yourself out and never want to clean again). It's really good for people who have ADHD like me and will wander around the house aimlessly doing several things at once but never completing any of them.

Next: Organizing Solutions for People with ADHD

This is a great book on reducing clutter by reducing what you own, finding a way of organizing that works for you, giving up perfectionism, and also staying on top of the mess. I honestly think it would work for anybody, not just people with ADHD.

Now that we've gotten our lives less messy, let's move on to food.

Food can be an issue for those of us with epilepsy. I love to cook, but I've also had doctors tell me that stovetop cooking can be really dangerous. And I've got to admit I really wouldn't like to burn myself by having a seizure while cooking. So I've made a few adjustments that have helped me continue to cook delicious food while maintaining a certain degree of safety.

First, I own three slow cookers. Yep, three. One was a gift from my parents and it's tiny and I honestly have no idea what to do with it, but I keep it around because it might make a great fondue pot in case I ever decide to make fondue or date someone who isn't allergic to dairy and would like to make fondue. The other two I got at a thrift store and they are enormous. I purposely got crockpots big enough that I could use them to cook a whole chicken because sometimes I like to cook whole chickens and making tons of food at one time means I'll always have food available when I really don't have time to cook. Also chicken is much less expensive whole, and I hate having to pay over a dollar a pound for anything. I'm downright stingy when it comes to paying for food.

Find a few meals you're good at cooking and think of variations on those meals. I can usually find chicken drumstick on sale at a local store for $.88/lb.  I buy a few packages at a time, split them up into bags of three or four and freeze them. I can cook them in the crockpot with barbecue sauce until the meat comes right off the bone and use that for sandwiches. I can cook them in the crockpot with some herbs, remove the bones and add broth and noodles for soup. I can thaw them and add herbs and spices and cook them in the oven for about forty minutes at 400*, then 20 minutes on broil so the skin gets crispy (always check the internal temperature. Always). I can add cheese to that and make it extra awesome and delicious. I can add cheese and bacon and make everyone ever love me. 

^^That's just chicken. Those are just meals using chicken.

I'd say to invest in a cookbook, but honestly there are so many recipes online that I don't think you need one. I have a few favorite cookbooks, but I barely use them anymore.

If you need to make some quick and easy meals, No More Ramen is the place to go. Easy meals, easy instructions. They're also usually pretty healthy.

My biggest issue when it comes to food is shopping. Transportation is hard. Shopping while using public transport is such a pain. If you can find a friend who'll take you shopping when they go (arrange some kind of exchange--you'll cook for them, clean their bathroom, whatever they're ok with. People are friendly to this kind of stuff), that's the best deal. If you have to take the bus, having one of those little rolly cart things, is such a good idea. No one wants to carry ten bags on the bus, especially if one of the bags decides to break and show the world what kind of tampons they're using. But ten bags in a cart that you've covered in super-fashionable Hello Kitty stickers? Everyone is into that!

If you have questions, suggestions, or if you'd simply like to tell me that I'm totally disability-ing wrong, leave it all in the comments.

The thing about being sick all the time is that I don’t feel like I’m ever allowed to be normal sick. If I can do my chores and my homework and live my life when I’m having seizures, why can’t I do it with a cold or the flu? And I know other people think this way because I’ve had teachers get mad when I miss class for the flu (yet say nothing when someone walks into class halfway through because she lost track of time). I’ve had people wonder why I can’t keep everything clean and finish all of my chores. But right now I feel like I’m drowning.

I’ve been sick the past couple of days. Just migraines worsened by allergies and constant, constant exhaustion; but I feel so mad at myself when I don’t finish my chores, when I can’t get the tasks I’d set out for myself done. I know it’s unreasonable. I know I should be more accepting of my situation, but if I don’t do what needs to get done, who will? There’s no one else who will do it.

I posted this on FB, but a friend recommended I make it more public. So here you go kids:

Dear men of FB, 

Most of you on my feed are pretty decent, but I’ve seen this happening a lot on my friends’ posts so I’m speaking up about it. When women share their stories of harassment, sexual assault, and rape, we aren’t asking for your advice. We don’t need to be reassured that not all men are like that. We already know these things. We’ve already taken self defense classes. We already walk home with our keys arranged between our fingers. We already have a bat or gun or some other thing we can use as a weapon sitting by our beds. We already have our just-in-case plans. Those plans are actually something that take up far too much space in our minds. We already purposely avoid eye contact with men on the street and on the bus. We don’t need your advice. We’ve heard it since we were children.

And we already know the “not all men” story. If we thought all men were rapists, we wouldn’t be friends with you. Most of us have brothers and fathers we love and trust. At least the lucky among us do. Most of us have male friends we feel fairly safe around. It is not your job to remind us.

When we are sharing our stories, we aren’t being misandrist. We aren’t accusing all men of the harassment and assault that has occurred in our lives. We are comforting each other. We are hoping someone hears and realizes that this is a real problem that needs to change, and we need the help and support of the male half of the population to make any significant change.

Activisms and Inclusivity.

I've been thinking about activism. I consider myself an activist: a queer activist, a feminist activist, and a disability activist. I don't feel very comfortable in a lot of activist communities though because a lot of activisms simply don't consider disability. It's not that they're trying to be exclusive; they just aren't remembering to be inclusive. So I hear a lot of dismissive comments about "internet activists" and "feet in the streets; boots on the ground," which is great and all, but if I am going to have my feet in the streets I have to ride an hour by bus (a bus that's only available every thirty minutes) and be able to get the last bus home (between seven and nine depending on day--Sundays are out because the bus doesn't come at all, time of year and how the transit authority has decided it's going to screw my neighborhood). I also have to know that I don't have to walk too far (epilepsy is not my only disability, and I have severe joint issues that are exacerbated when I have to do a lot of walking or repetitive movements) either to get to the rally/vigil/meeting/protest or that if the even includes a march it won't be far or too strenuous. So when people schedule these events at times that are impossible for me or other people with disabilities and then get pissy about us not showing up, I get a bit peeved.

And it's not just the people who can't drive, of course. There are so many activisms that are inaccessible for PWDs because they fail to consider sign language or closed captioning or accessible buildings or reaching out to people who are unable to leave their homes for whatever reason. There are so many activisms and activists who don't think about their language and the repercussions when they use ableists terms to describe the oppressions their fighting. It's not welcoming to us.

It's boundlessly frustrating. And I'm tired of being told that I need to be less sensitive, take a joke, or be patient. No. I am an activist. I am as much an activist as any of them. They would not wish to have their queer or feminist identities insulted. Why should I be less sensitive about having my disability insulted? They would not like to be told to be patient about queer or women's rights. Why should I be patient about disability rights?

I'm not going to be completely negative. I will give kudos to those who've worked to be inclusive. I was asked to read a poem at my community's Trans Day of Remembrance, and they worked hard to be inclusive to those of all abilities. It was beautiful. The day was not about me, but it was lovely to see that this activist community took care to include as many people as possible.