#i spent SO LONG looking for top surgery scars in cas cos i knew i had them SOMEWHERE

[orbitsuns]

happy trans visibility day!!

[dapperandwoke-blog]

Dapper and Woke Spotlight: Ace Ratcliff, Activist and Model

(Image: Ace stands on a beach facing the camera in a sheer gray dress with embroidered flowers and a headdress resembling deer antlers. Photo by Lance Gibson)

Dapper and Woke endeavors to examine style and fashion from all different perspectives, which was why I was so happy to find the #DisabledandCute tag on tumblr a few months ago, showcasing people with disabilities loving their bodies and showing themselves off without shame. I wanted to talk with some of the people posting in the tag, so luckily I got a chance to chat with Ace Ratcliff, aka @mortuaryreport, to talk a little bit about living with a disability and learning to love your body and your look. More after the break!

D&W: First, some basic biographical information, whatever you feel comfortable with: Full name if you want, age, place of residence, day job?

My name is Heather Ace Ratcliff; I’m 30 years old, and I live in Oakland, California. I’m currently a junior tech writer for a software company in the South Bay. Prior to this job, I worked in the cannabis industry and prior to that job, I was a mortician.

D&W: Ah, so that’s where the name of your blog comes from! I found you from browsing the #DisabledandCute tag on Tumblr and loved your photos. For those who don’t know you, you have Ehlers-Danlos syndrome, which is a genetic disorder, but do its effects manifest immediately from birth? Where was the point growing up that you began to conceive of yourself as being a differently-bodied person? Was it something you realized on your own or was it caused by other people?

Ehlers-Danlos Syndrome is a degenerative disease that causes the body to create mutated DNA at a cellular level. Many of us know that collagen is in the skin, but what lots of people don’t know is that collagen is an integral part of constructing all of the human body! 85% of the body’s systems have collagen in them. Collagen is like the building block of the body - it’s also the mortar holding the building blocks together. Because it’s a genetic disease, there’s no cure for it. The disease manifests differently depending on the human (and the type of Ehlers-Danlos Syndrome you’re diagnosed with.) The type I have is called hypermobile Ehlers-Danlos Syndrome (hEDS). Although I have a number of co-morbidities (simultaneous chronic illnesses) to go along with my hEDS, the primary symptom of the hEDS is that my joints dislocate and subluxate (partially dislocate) at random.

Looking back at my medical history, I realize now that the symptoms of my hEDS did manifest from an incredibly young age: I had eye surgery as a toddler, I had pituitary growth hormone deficiency as a young adult, and major growing pains. My back pain started when I was 16 or 17. With hEDS, the symptoms can often be seen as a boon when people are young: I was very flexible, which was useful when I was learning karate; my skin is velvety soft.

I started searching for a solution to my chronic back pain when I was 18 or so. I didn’t get a diagnosis of hEDS until I was 27 years old, which means I spent about a decade trying to figure out what was wrong with me. Statistically, I actually beat the curve: most patients take many more years to discover they have EDS. I began the slow process of identifying as disabled as I began to understand my diagnosis and the effect hEDS would have on the rest of my life. Settling into my identity as a disabled person felt more natural as I began having surgery, managing hEDS, and using accessibility devices such as my cane and my wheelchair.

 (Image: Ace riding her wheelchair in jeans and a white tanktop showing off the tattoos covering her arm from shoulder to elbow. Photo by Sean Alonso of 1 Shot Photography.)

D&W: Was there a moment where you consciously switched from just identifying as disabled to being an activist for disabled rights?

I can’t think of an exact moment when I decided to become a disability rights activist; it was a slow evolution from my diagnosis as I began to face the realities of an ableist world that not only wasn’t designed for disabled people, but actively tried to exclude us from existing equally. My privilege as someone who was non-disabled (and had primarily non-disabled friends) means this was a whole new side of the world that I not only hadn’t interacted with before, but didn’t even know existed.

D&W: So as an activist, what do you think is the biggest failing in able-bodied activist circles when dealing with people with disabilities? Do you feel like you've noticed any change over your life how people treat ability as an intersectional axis of privilege and oppression along with race, class, gender, etc? For better or for worse?

I can tell you without qualms that the biggest issue in any kind of activism is the exclusion of the disabled experience. Well known activists regularly exclude disability. Marches exclude disability. Feminists exclude disability. It often feels like everybody excludes disability except for disability activists - which makes no sense, because the experience of disability does not differentiate based on race, gender, income, sex, anything. ANYONE can be disabled, anyone can become disabled, at any time. Disabled humans make up 20% of the American population and 15% of the world population. We’re a huge community that encompasses everyone and can affect huge change and… nada. Of course, you can argue that there’s been noticeable change in how disability is treated given the establishment of the Americans with Disabilities Act in 1990 (ADA), but that was a very baby step, believe it or not. The ADA is frequently not enforced and not punished for a lack of enforcement. Generally speaking, we’re still very much an ignored minority.

D&W: Tell us about your personal favorite modes of activism and how other people with disabilities may find ways to get more socially engaged.

I think one of the things that’s really underrated in non-disabled circles is activism on social media. So many people denigrate it as “slacktivism,” but the truth of the matter is that not everyone can get out there and march, so being at home, writing, talking, calling - everything you can do from the comfort of your own living room is really important and does make a difference. If you can take photographs of your experience, boom, post it. If you can write blog posts about your experiences, make it happen. If you can make calls, pitch articles, whatever! Getting our voices out there and heard is the important part, it doesn’t matter where we’re doing it from!

D&W: One of the great things about the #DisabledandCute hashtag is the message that all bodies are worthy of being loved by themselves and by others. You look fantastic, by the way. What are things that help you love your body? What are some self-care rituals that you have?

Thank you! This is a tough one for me, because I have a very split relationship with my body (which I call my “meatcage”). I deal with chronic pain, chronic fatigue, chronic insomnia, chronic syncope (passing out), you name it and it seems like my body does it. One of the things that’s been extraordinarily helpful for me has been getting tattooed.

(Image: Ace reclines on a rock crag in a black dress with sheer top and opaque skirt and black wedge heels. The tattoos covering most of her right leg are plainly visible.)

D&W: Why getting tattooed in particular? Does putting your own design on the "meatcage" help you feel in control of it?

I always knew growing up that I was someone who wanted to be tattooed. For years, I told my mom that I was skipping school on my 18th birthday and spending the day at a tattoo studio. (She did not believe me and it was a major argument when I came home that afternoon with a new tattoo - the Rebel Starbird, the symbol for the Rebel Alliance from Star Wars.) At the time, before my diagnosis, I just enjoyed getting tattooed because I loved the way it looked.

After my chronic pain started really ratcheting up in my early 20s, getting tattooed quickly became a coping mechanism. The pain from EDS was consuming and exhausting, and I didn’t have a medical reason for any of it. All of the doctors I saw thought I was either exaggerating or a hypochondriac. Getting tattooed quickly became a way to experience pain that was within my control. I got to choose when I would hurt. I got to decide when it would start and when it would stop. Even better, at the end, I had something beautiful as a result of my pain. EDS didn’t leave me with anything but surgical scars; getting tattooed left me with art.

Eventually, I discovered that getting tattooed also seemed to “re-set” my pain levels. Sitting for a session sent a wave of neurochemicals that left me in a happy cloud immediately after the session, but getting work done for long enough seemed to “interrupt” long cycles of pain, as if the pain were hitting a wall.

I have a severe sense of dysphoria in relation to my body. I am trapped in a cage that I have no control over. More days than not, I hate it. I have long, complicated daydreams about having my left foot amputated. Getting tattooed not only helps me feel a sense of control over my pain, but it makes the cage I’m trapped in feel like something that belongs to me instead.

D&W: Which is your favorite tattoo?

My favorite tattoo depends on the day, but last year I got my dogs tattooed on me as saints. One of my dogs, Harper, died of congestive heart failure last month, and I have a big piece of her where she’s Joan of (b)Arc - laurel crown, armor, spear, all of it. It’s been really comforting to look down at her every time I miss her and feel like I’ve still got her with me! (Those tattoos were done by Kristina Benett at Sugar City Tattoo in Crockett, CA)

(Image: Ace’s left arm showing multiple dog tattoos as described above as well as a tattoo that reads “WE ARE CANCELLING THE APOCALYPSE,” a quote from Pacific Rim)

D&W: One of the main focuses of our blog is clothing, and making style and fashion accessible to many different people. What difficulties do you have, if any, with clothing that is designed for able-bodied people? Are you aware of any fashion brands that try to cater to people with disabilities? We're trying to find out ourselves so we can give them more exposure!

I know there have been a few companies out there trying to make clothing for wheelchair users, but the ones I’m familiar with have been shut down. Clothing that’s designed for non-disabled humans definitely doesn’t focus on the things I need: my skin actually bruises when seams are too tight or too noticeable, so soft fabrics and gentle seams are a must. My joints are constantly in flux, so pulling clothes over my head can sometimes be next to impossible. Also, you really don’t realize how not made for wheeling many outfits are until your jacket is stuck in the spokes of your tires! All of these things would be huge improvements!

 (Image: Ace’s jean jacket covered in various buttons, including a Black Lives Matter, “Fuck Trump” and a marijuana leaf. Photo by Sean Alonso, 1 Shot Photography)

D&W: Tell me about your favorite outfit and when you feel you're at your cutest or most powerful/proud, and what about said outfit makes you feel as such.

My favorite outfit changes completely depending on the weather and the mood I’m in. Lately, my favorite piece of clothing has been a BDU camo jacket I picked up from a military surplus store. I’m all about jackets - I have a jean jacket covered in pins and patches that’s my other favorite - you can see it in some of the pictures I sent along (above). I feel my best when I’m wearing something comfortable that I LOVE, when I have my eyebrows on, and when my tattoos aren’t covered up! For me, looking good and feeling good are all about being comfortable in my own skin.

D&W: Who are some other disabled models/style icons you take as inspiration and/or want our readers to know about?

On Instagram, I adore Rebekah Taussig (@sittingpretty). Also on IG and Twitter is Karolyn Gehrig (@karolynprg). Leigh (@leighdollface on IG), Sam de Leve is awesome (@ChaiKovsky on Twitter), @StormyEnt on Twitter, Esme Wang (@esmewwang on Instagram), Michelle Roger (@michelle_roger on IG) .... The list goes on forever and I know I’ve missed way too many humans, so basically just hop onto my Insta or Twitter and check out who I’m following!

(Image: Ace stands in front of a white brick wall in a white corset, black briefs, and black calf-length boots carrying a bottle of wine in one hand and dropping a black jacket in the other)

 You can find Ace on Twitter, Instagram, and on her website www.mortuaryreport.com