Who do you Matter for?: Activism When Your ‘Self Care’ is ‘Self Harm’

 

CW/TW: Self-harm and injury

 

“Who do you need to matter for?”

The question was posed to me in my first meeting with a new therapist. It hit me surprisingly hard and I had to hold back tears. I hadn’t actually considered the ‘who’ in my fretting and over compensating and pushing myself to the brink.

 

I have long ago determined that I must do everything at 100 miles per hour in order to make sure that I’m accounted for, that I am offering something to the world. That I am worthy of…what? I had never stopped to consider that what/who of the situation. With one question this therapist threw me.

 

I wish I could say that brief pause caused me to step back, take a break, replot the course. It didn’t. But it did make me consider who it is I want so much to be there for.  

 

I came into work today feeling less than capable of taking over the world, as I have for some time now. When putting together some dates for a lunch, we regularly had to question, “Is that restaurant accessible?” while trying to use Google Street View to catch a glimpse at the front door because we know that the answer we’d get if we called the restaurant was just as likely to be wrong.

 

This happens because, despite Federal laws and building code requirements, businesses regularly get permits to open businesses in inaccessible buildings.

 

This realization and frustration with inaccessibility in the built environment is what determined the course of my undergrad education and what I do for work now. It is why I got an Urban Planning degree and became International Code Council certified in Accessibility. At the time, and in my work today, I guess it’s what I need to matter for.

 

Because I have friends that can’t come to my house for my birthday or when they need to talk. I have colleagues that can’t just decide to go out after work without first scoping out the accessibility of the meeting spot. There are events that I miss because the space is too difficult to navigate in a flare.

 

Right now my email is full of the work of partners fighting rent increases in subsidized housing, work requirements for access to healthcare, and for disability representation in the media. All these are issues that affect the perceptions and ideas but also the very basic necessities of life for people with disabilities, POC, and low-income individuals.

 

Yesterday, I sat in a conference room full of women of color discussing how they are still told they cannot do or are unfit for certain work tasks based on their gender and skin tone despite being mayors, lawyers, CEOs, and public servants.

 

I watched trans friends be destroyed by the news of forced sterilization in Japan, and saw marriage rights be removed for same sex couples in Bermuda.

 

My need to matter, whatever that means, is for all those parts of me that belong in each of these categories. For the part of me that incessantly needs the world to be better.

 

But where does that leave my well-being?

 

I’ve been made a wreck with the continuous go-go-go of life but no matter how I try, I cannot slow it down. Yesterday, I had two separate panic attacks at work yet continued on my course. It is wearing me thin, and while the logical part of my mind is very cognizant of it, my feet keep moving, my hands keep typing, and my mind keeps racing from one thing to the next.

 

Do we take time for the ever elusive ‘self-care’ as people who care about others? What does self-care mean to a person whose main sense of relief often comes from things that are classified by professionals as ‘self harm’?

 

I haven’t cut myself in many years though the thought is regularly at the edge of my finger tips. Instead, I’ve moved on to less obvious — and admittedly less satisfying — forms of self harm. I pick my face, nails, skin until it burns and bleeds; I run until my lungs burn and I want to throw up, way past a runner’s high and a good cardio exercise; I pull at and out my hair.

 

While I would be quick to say I don’t do these things to harm myself (hey – running is even good for you!), they’re just coping mechanisms. Would I feel no qualms about a friend using alcohol, hard drugs, or risky behaviors as their coping mechanism?

 

If that’s the case, what options do I have? Doing my nails or going for a massage might have some temporary pleasure but it hardly releases me from the agony and chaos that is often residing in my head. What does self-care look like for me?

 

Recently I’ve seen blurbs floating around social media that ‘self-care’ does nothing for the poor who can’t afford the time off or pampering that is often associated with the idea. I feel like it doesn’t apply to those of us whose ideas of relief stem from self-destructive behaviors either.  One US study estimated a nearly 6% lifetime prevalence in self-injury; it’s not just girls or teens but adults trying to cope with their lives.  

 

So what are the options for people like us? A quick Google search brings up the same hotlines and coping skills I’ve seen my whole life. Taking a walk, calling a friend, petting an animal, focusing on your feelings…all which work to an extent, but never seem to provide quite the break I often feel I need.

 

This blog does not have an answer. I just know that people are hurting and often I feel I have to be involved in fixing that, but I can’t do it without hurting myself.  

 

It is hard to determine if ‘self-care’ is a myth or if the ideology of activism does not permit times of rest. Whatever it is, it must change and the disability community seems a perfect place for that to happen.

 

If anyone understands how difficult it is to fight under pain, how impossible it sometimes is to take place in a march or a sit-in, how necessary it is to take care of oneself, it is disability activists.

 

Maybe in our activism for a better, more inclusive, more compassionate world, we also must fight for ourselves. For a world where being a part of the fight doesn’t require nightly punishments. Where individuals feel supported in sitting out the next protest or backing out of the next phone drive as well as being supported when their time and effort is 110% dedicated to the cause. Sometimes we can only give 10% and stay alive.

 

Maybe sometimes a little self-advocacy is what we need for self-care.

My Husband’s Been Married to Borderline Personality Disorder for 5 Years

CW: Suicide

 

 

This week my husband hid the Percocet without telling me. He hid the Percocet because a few weeks ago I sat on my bed with a handful of them, not feeling sad, just calm and empty and ready to finally not be alive anymore. I didn’t do it because of a strange, almost vain reasoning: the opioid epidemic. I didn’t want anyone thinking that I overdosed on Percocet because I was a closeted, functioning addict.

 

My husband hid the Percocet because he knew this story. He did it without fanfare. I only found out because I needed one for pain so he mentioned over the phone, “Oh by the way, I moved the Percocet to that top shelf you can’t reach, you’ll need to get the step stool.”

 

This is a type of everyday life for him and for us. It is the type of life where he checks in every so often to every day, depending on how it’s going, to ask me if i’m “doing okay” which is largely code for “do you want to end your life and/or never leave bed again?” and where I’ve agreed to always tell him the truth. Sometimes its “I’m fine” sometimes it’s, “I can’t do this” and occasionally it’s, “Maybe we need to talk about me going back to the hospital.”

 

Despite the fact that my husband has intense anxiety, we have managed to find balance in this reality. He is not anxious so much as concerned. My suicidality just is.

 

I have Borderline Personality Disorder. My diagnosis was very recent (within the last two years) but I’ve been miserable since I can remember.  After my diagnosis I avoided therapy so much of what I’ve learned about BPD has been from websites and forums.  The more I gathered the more things just fit. So much about what others didn’t get about me started to make sense.

 

It explained why a chief complaint of a high school friend was that I “felt too much.” It explained why I fall in love so hard, fast, and unyielding. It explained why even my depression did not seem like other people’s depression. It helped my gracious husband understand my extreme affection and dependence on another man who (despite knowing him for almost a decade) I didn’t really know, we learned together he was my “Favorite Person” (Note: for those unfamiliar, a Favorite Person or FP is an individual whom someone with BPD is extremely emotionally dependent on and often swings between intense idolizing and devaluation).

 

It explained my impulsivity which was the first sticky point in my and my husband’s relationship. He doesn’t handle change well. Not just big change either. The first time it came up was early in our relationship when while walking out to his car I told him about a battle of the bands I had just heard about and asked would he be up for doing that for our date instead. He had a bit of a breakdown. Explained how he really didn’t like that I was always changing plans after we’d agreed on what we wanted to do. He wouldn’t learn for another few years how I packed up what I could and moved across the country to be with him with no job, $500 in my bank account, and living with a guy I found on a craigslist ad who said I could have a room for free if I drove him around. What we were doing that day was small potatoes. Still, it was and is difficult for me.  We came to an agreement. I told him I’d try but that I would never be the type of person to settle down. If he needed someone that could be rooted he’d need to find someone else, but that I would do my best to try not to change things without notice unless I felt like I’d explode otherwise.  

 

I really think that is what it is all about. I have seen so many people on Twitter or forums afraid that finding love with BPD is impossible. But my relationship is not a unicorn (though I feel fairly certain no one will find a husband as wonderful as mine) but I do think it’s about honesty, which can be hard for us with BPD.

 

I don’t mean honesty as in not telling lies, but honest about what we need and what we feel. For many of us, we’ve so long been criticized because of what and how we feel; add to that a difficulty trusting and a desire to accommodate and it makes it hard to be truthful about what we need. While I’m not some type of relationship guru, I think that’s imperative.  

 

Voicing what you need to a person that you care about helps you self-care and ensures you’re with a person that can love you back because some people won’t be able to.

 

My husband loves a woman who he has to worry will take her life.

He loves a woman whose emotional buoyancy is strongly attached to a different male.

He loves a woman that can’t be still despite his need for calm.

He loves someone that rarely is able to believe he loves her and he won’t leave.

He loves someone who gets jealous at the idea of him loving children more than her.

 

But even before a diagnosis, before we had words or names for these aspects of my personality, I told him they were there and he told me he’d take them. He loved my mental illness and that helped me love myself. I am now proud that I ‘feel too much’ when before those words haunted me.

We celebrated our 5 year anniversary this week. That isn’t a long time, but I didn’t plan to live this long, so it feels like everything. I didn’t plan to marry for love, but figured I’d marry out of loneliness, so this is a gift. I guess I just want those who are so worried you’re unlovable due to mental illness to know that it is okay and you are allowed to need differently. That there are people out there who are okay with loving differently and validating you a million times in a million different ways. But I do think it takes being okay with yourself so you can let others know what you need and sometimes that part is really hard.

#MeToo Forgot About Disability

CW: Blog discusses sexual assault topically, specific assaults are not detailed.

 

Last week I had the pleasure of being on a call for the National Disability Leadership Organizer’s Forum and the speakers addressed a topic that, despite the recent spotlight, is being glossed over for people with disabilities: sexual assault.

Despite the explosion of the #MeToo movement and Joe Shapiro’s recent week long NPR series on sexual assault and people with disabilities which can be heard here, we haven’t had much (if any) space at the table to talk about our experiences and how disability factored into them.

For some, like me, sexual assault created disability. I take PTSD medication due to nightmares and night terrors as a result of continued sexual abuse as a child. I know others have similar stories.

For others, their disabilities put them in a place of vulnerability to someone who took advantage. They may have had a caregiver who sexually assaulted them or they were unable to escape from a threat.

A study recently released by the National Council on Disability highlights the lack of attention being paid in regard to sexual assault and people with disabilities on college campuses. The study was conducted after reports from the Association of American Colleges which note that the rate of undergraduate women who had been sexually assaulted was at 31.6% for women with disabilities versus 18.4% for women without. The report, Not on the Radar: Sexual Assault of College Students with Disabilities found that disability was largely overlooked at the colleges researched, which spanned 14 different states. Here are just a few of the ways disabled people were not included in policies and procedures:

  • Title IX websites and offices often had no mention of accommodations and were not partnered with colleges’ disability services
  • Trainings and information were not accessible
  • Communications were not readily available for people with disabilities that may need them if reporting a sexual assault.

An ongoing court case, Shank v. Carleton College, is addressing another side of sexual assault on college campuses. One claim regards ADA violations wherein a student was not accommodated for her PTSD caused by rape. The student’s requests, including the expulsion of her two rapists, a request to take classes remotely, and removal of classes from her record that had to be dropped immediately following the rape, were all denied.

Sexual assault happens to people with disabilities and creates disability for people, but our stories aren’t being heard. I support the #MeToo movement and hope that it continues to highlight the pervasiveness of sexual assault and the dangers of the rape culture we live in but the movement cannot be complete without including the voices of the disability community. We are disproportionately at risk for sexual violence on our bodies. Joe Shapiro’s recent series estimates people with intellectual disabilities experience sexual assault at rates seven times higher than the general population and the Bureau of Justice Statistics Report on Crime Against People with Disabilities says people with disabilities are twice as likely to experience sexual assault. We cannot talk about the ramifications and dangers of sexual assault in our culture and not include disabled people.

However, I think this is also part of a larger conversation regarding the sexuality of people with disabilities. And to be frank, it’s jacked. We hear story after story of the desexualizing or hypersexualizing of the bodies of the disabled. As a woman with Borderline Personality Disorder, there’s a common misconception that I am somehow a sexual minx, a slut, and we live in a culture that questions if a ‘slut can be raped’.

On the other end, and perhaps more commonly, society denies people with disabilities sexual autonomy. They remove sex from people with disabilities and collectively decide that people with disabilities are unable or unwilling to have sex lives. We lack adequate sex education and the privacy of sexual relations. People with disabilities are forced to have to get permission to be sexual beings.

Yet, when sexual actions are forced upon us there is question as to the validity of that assault or our stories are buried, considered too uncomfortable to be shared.

Isn’t this a crucial part of the #MeToo movement? Providing those voices and acknowledging those truths that have often but ignored or tucked away? How can that be the goal while silencing, omitting, and ignoring the stories of people with disabilities? It can’t. Sexual assault on the disabled body is still sexual assault – it affects #UsToo.  

 

 

Cantor, D. et al. (2015). The Association of American Universities accessed https://www.aau.edu/sites/default/files/%40%20Files/Climate%20Survey/AAU_Campus_Climate_Survey_12_14_15.pdf

Not on the Radar: Sexual Assault of College Students with Disabilities. National Council on Disability (2018). Accessed at  https://ncd.gov/sites/default/files/NCD_Not_on_the_Radar_Accessible.pdf

Harell, E. 2017. Bureau of Justice Statistics Report on Crimes Against People with Disabilities (2009-2015).Accessed at https://www.bjs.gov/content/pub/pdf/capd0915st.pdf

Shank v. Carleton College, No. 0:2016cv01154 – Document 41 (D. Minn. 2017). Accessed at https://law.justia.com/cases/federal/district-courts/minnesota/mndce/0:2016cv01154/155582/41/

Shapiro, J. (2018). Abused and Betrayed. NPR. Accessed at//www.npr.org/people/2101159/joseph-shapiro

Some Thoughts and Resources on H.R. 620

It’s been a rough week.  I have been watching H.R. 620 since 2017, but there wasn’t much talk because bills just like it have been popping up since the Americans with Disabilities Act (ADA) was passed in 1990.

 

I think many of us were too quiet and complacent up until the end. But the House is just one side of the equation.

 

ADAPTers and other members of the disability community did amazing work over the summer to secure our healthcare and we need to do it again. It is time to make the idea of passing this bill as vile to the Senate as it is to the people.

 

There’s a poem I love in the play FOR COLORED GIRLS By Ntozake Shange called “Somebody almost walked off wid alla my stuff” and while the context is different it’s how I feel.

 

Congress is trying to walk off with alla our stuff. Stuff that was fought for. Stuff that was protested for. Stuff that was chained to doors and crawled up stairs for. The Americans with Disabilities Act was won with bloodied knees and sore throats and it is time to protect it.

 

It may have passed the House, but we must let the Senate know that is not okay. We must keep the momentum building and the pressure on.

 

We MUST –

Write letters

Make phone calls

Tweet messages

Post on Facebook

Write press releases

Create blogs

Make videos

Protest outside of offices

 

Do what you know you can do. I will do my best to do my part too.  I plan to post further updates as this bill moves forward, as well as share resources for reaching out here and on Twitter.

 

To start, a list of all US Senators. Reach out to the ones in your state.

https://www.senate.gov/senators/index.htm

 

State Senators’ Twitter Accounts

http://listafterlist.com/list-of-united-states-senators-twitter-accounts/

 

Resistbot is a great tool if you are unfamiliar or uncomfortable reaching out through phone or mail. Text RESIST to 50409 to send messages to your representatives.

The American Association of People with Disabilities (AAPD) is holding their REVUP campaign to get people with disabilities registered to vote. They will have statewide coalitions to help #cripthevote. More information is available here

National Council on Independent Living issued a statement you can read here.

A statement from the ACLU can be read here.

 

A Convergence or a Fork in the Road

I have been going back and forth between writing a blog or leaving it be for some time now. I feel like I have things to say, but not necessarily anything that so many other people in the disability community and beyond aren’t also saying.

And then this week happened.

This week I have been exhausted. I have both ‘mental illness’ and chronic illness and both have been acting up.  A week ago I sat on my bed staring at a handful of pills I intended to swallow not because I was sad but because I am tired.  

Then I fought through this week to Wednesday where a young boy killed 17 people and every argument I see, on both sides, points to mental illness as the culprit. I see young people scared to go to school and people realizing that evacuation practices leave so many people with disabilities in danger.

Then I get to today, when the House has voted on H.R. 620 to amend the Americans with Disabilities Act creating notification requirements and waiting periods for people to make businesses accountable for their non compliance with the law.  On top of that my body is flaring and I am in so much pain it hurts to move.

And I think, now, I can’t not say things.  I am a person with significant mental illness who lives in near constant pain and exhaustion. I am a woman with disabilities who is an advocate by profession and a burgeoning activist.  I am a student of emergency management with hopes to change the way we keep people of all functions and abilities safe.

I am also a wife. A sister. Queer. Black. Hispanic. African-American. A million other things. I hope this will be a place to celebrate all of those while being truthful about the reality created by living within those intersections in our society.

It’s been a long week. I have a lot to say about it. I guess this will be the start.