Feeling the Weight: Some Beginning Notes on Disability, Access and Love

This essay was originally published in Issue Ten of Makeshift Magazine.

This is a beginning; a dive into waters that I swim every day, but have been taught not to speak about.  I struggle with how to talk about love out loud in a way that holds access and doesn’t diminish love in all its glory, but instead illuminates how ableism twists and threatens love and relationships. Needing to constantly negotiate access for my physical disability within all my relationships in an ableist world has shaped the kind of connection and love I am able to have.  I have been scared to open up the Pandora’s box that holds the intimacies of ableism.  Scared to talk about some of the deepest parts of what disability has meant in my life.

Most days I feel like access and love are like oil and water.  I wonder how the two can possibly coexist.  I am speaking of love broadly, meaning any relationship where there is love, whether that is between friends, lovers, family members (chosen, birth, situational), community members, etc. As a queer disabled woman of color adoptee, I am questioning the very fabric that makes up love and, in particular, disabled people’s access to love—or, rather, the kinds of love (and relationships) that disabled people have access to.  How can disabled people who rely on our loved ones for daily access be our whole selves when that threatens the relationships our access and survival depends on?  And how can this support genuine, deep, loving relationships?

The activist-dreamer-revolutionary part of me believes that access and love don’t have to be separate.  It is the part of me that is committed to revolutionary love, radical love, or whatever it’s being called these days.  It lives off of the idea that somehow, if we work hard enough at this thing called liberation, our lives will be different: institutions, relationships and all.

But my life has proven different.  My lived experience has left me holding one half of my heart in each hand, one for access and one for love, crushed.  I have found myself on cold windy cliffs, staring at the canyon between the two.

I have watched ableism tear apart relationships with people I love.  I have seen access be too much of a barrier for people to be in relationship with each other.  I have made excuses for inaccessibility because I loved people and didn’t want to lose relationship with them.  I have excused racism, sexism, violence, homophobia because I didn’t want to, couldn’t afford to, lose access.  I have asked for access or raised ableism in relationships, only to have those relationships end abruptly. I have stayed in relationships for access and I have been too afraid to enter into relationships because of access. I have had access held over my head, leveraged for able-bodied supremacist means, or treated like a reward for good behavior.  I have had access made invisible or belittled by loved ones; I have had to make access happen so the person providing access didn’t know they were.  I have kept parts of myself from people I love because I was afraid to, didn’t know how to, be whole and complex in the context of needing access.

This is the cruelty of ableism: it robs us of each other.  This is the weight of access.  This is what gets said in whispers, not on the microphone and at the panel.  This is what gets shared in a fleeting glance between us, disabled, sick, crip folks; a recognition, a silent sigh, an unfocused stare.  This is what we don’t share, don’t know how to share, because it is so instinctual, so ground-level, so what’s-the-point-it’s-never-going-to-change.  This is the air I’ve breathed since I can remember, as a disabled child, never knowing it could be any different—never having been able bodied.

The weight of inaccessibility is not logistical.  It is not just about ramps, ASL interpreters, straws and elevators.  It is a shifting, changing wall—an ocean—between you and I.  It is just as much feeling and trauma as it is material and concrete.  It is something felt, not just talked about.  It is made up of isolation from another night at home while everyone else goes to the party.  The fear of being left by the people you love and who are supposed to love you.  The pain of staring or passing, the sting of disappointment, the exhaustion of having the same conversations over and over again.  The throbbing foolishness of getting your hopes up and the shrinking of yourself in order to maintain.  It is an echoing loneliness; part shame, part guilt, part constant apology and thank you.  It is knowing that no matter how the conditions around me change, my body will still not be able to do certain things—it will still need other people, it will still signal dependence, it will still be disabled.

At 30, I have experienced many different kinds of beautiful love, largely because I have had the privilege of not being locked away in an institution, group home or my family’s back room like many disabled people.  And indeed, to question the love I have been honored to experience on this page is terrifying and puts my current relationships, love and access at risk.  But these are the parts of disability justice and liberation that keep me up at night, that have hurt more than any ableist remark, that have left more scars than any surgery.  This is the underbelly of ableism.  This is what I fear we will be left to wrestle with after every building is made accessible and every important policy is passed.  This is what I desire as a queer disabled woman of color adoptee: to be able to love and not have access used as a weapon, and to be able to have access without the fear of losing love.

Access Intimacy: The Missing Link

There are many ways to describe intimacy.  For example, there’s physical intimacy, emotional intimacy, intellectual, political, familial or sexual intimacy.  But, as a physically disabled woman, there is another kind of intimacy I have been struggling to name and describe, what I have been calling “access intimacy.”

I have begun using the term loosely and am still realizing different aspects of it.  This is in no way a complete describing of it, instead, this is an initial naming and the beginnings of giving it shape.  I am offering it as something that has been useful for me and I hope is useful to others to describe all different kinds of access, not just in relation to disability.  I think Access, as a framework, is powerful for so many of our lives.  Here, I am speaking from my own lived experience as a physically disabled person but I know access intimacy can also happen in many different ways for mamas and parents, women of color, queer and trans folks, etc…  Anyone can experience access intimacy.

I have never had words for access intimacy before.  For years, I would feel it or crave it, but not know how to describe it. It has always been just out of reach; just beyond my grasp.  I have mistaken it for emotional or political intimacy, sexual attraction or romantic desire.  I have mistakenly assumed that it would be there based on one’s identity or experience.  I have grappled with how to describe the closeness I would feel with people who my disabled body just felt a little bit safer and at ease with. There have been relationships that carried emotional, physical and political intimacy, but sorely lacked access intimacy.  And there have been relationships where access intimacy has helped to create the conditions out of which emotional, familial and political intimacy could grow.

Access intimacy is that elusive, hard to describe feeling when someone else “gets” your access needs.  The kind of eerie comfort that your disabled self feels with someone on a purely access level.  Sometimes it can happen with complete strangers, disabled or not, or sometimes it can be built over years.  It could also be the way your body relaxes and opens up with someone when all your access needs are being met.  It is not dependent on someone having a political understanding of disability, ableism or access.  Some of the people I have experienced the deepest access intimacy with (especially able bodied people) have had no education or exposure to a political understanding of disability.

Access intimacy is also the intimacy I feel with many other disabled and sick people who have an automatic understanding of access needs out of our shared similar lived experience of the many different ways ableism manifests in our lives.  Together, we share a kind of access intimacy that is ground-level, with no need for explanations.  Instantly, we can hold the weight, emotion, logistics, isolation, trauma, fear, anxiety and pain of access.  I don’t have to justify and we are able to start from a place of steel vulnerability.  It doesn’t mean that our access looks the same, or that we even know what each other’s access needs are.  It has taken the form of long talks into the night upon our first meeting; knowing glances shared across a room or in a group of able bodied people; or the feeling of instant familiarity to be able to ask for help or support.

In my life, access intimacy is something that has been hard won, organic or at times even felt magical.  It has taken me by surprise, showing up with people that I never would have expected to have that kind of “access connection” with.  It has been exciting and relieving, like a long slow exhale.  I don’t know where it comes from or how it happens.  It has felt like an unspoken, instinctual language between different people, like an entirely unique way of being able to communicate and connect.  Similar to meeting someone you just “click with,” access intimacy has felt like a distinct form of attraction, desire and energy on to itself.

Access intimacy is something I am coming to understand that I need in my life; something that I cannot (and don’t want to) live without.  I need it to literally be my whole self because access is such an intimate part of my life as a queer physically disabled woman of color adoptee.  Without it, relationships exist under a glass ceiling or split by thick frosted windows, with huge pieces of myself never being able to be reached. Without it, there is survival, but rarely true, whole connection.

Access intimacy is not just the action of access or “helping” someone.  We have all experienced access that has left us feeling like a burden, violated or just plain shitty.  Many of us have experienced obligatory access where there is no intimacy, just a stoic counting down of the seconds until it is over.  This is not access intimacy.  There have been numerous relationships in my life where I have loved people very deeply, but never fully felt safe with them around my access.  So many relationships where I knew I could only ask for or share so much, without getting snapped at, chided or being punished with reluctant passive aggressive access.  So many times where I was too afraid, because of the lack of access intimacy, to speak up and voice what I needed or what I couldn’t do, resulting in being isolated or getting very badly physically hurt from pushing myself too hard, in some of the worst cases.

Access intimacy is not charity, resentfulness enacted, intimidation, a humiliating trade for survival or an ego boost.  In fact, all of this threatens and kills access intimacy.  There is a good feeling after and while you are experiencing access intimacy.  It is a freeing, light, loving feeling.  It brings the people who are a part of it closer; it builds and deepens connection.  Sometimes access intimacy doesn’t even mean that everything is 100% accessible.  Sometimes it looks like both of you trying to create access as hard as you can with no avail in an ableist world.  Sometimes it is someone just sitting and holding your hand while you both stare back at an inaccessible world.

It has looked like relationships where I always feel like I can say what my access needs are, no matter what.  Or i can say that I don’t know them, and that’s ok too.  It has looked like people not expecting payment in the form of emotional currency or ownership for access.  It has looked like able bodied people listening to me and believing me.  It has looked like people investing in remembering my access needs and checking in with me if there are going to be situations that might be inaccessible or hard disability-body-wise.  It has looked like crip-made access.  It has looked like crip solidarity.

In the last half decade of my life I have been able to experience many different forms and levels of access intimacy.  Before that, I was not even in a place where I could have had access intimacy with anyone.  It has only been in the last seven years that I have come into myself as a politically disabled person enough to begin to experience or desire access intimacy, even on superficial levels.  Looking back, there have been only a handful of relationships in my life where access intimacy has existed.  And in most of them access intimacy was not instant, but built and cultivated, with me bearing the brunt of the work.

For the first time in my adult life, I am experiencing access intimacy that is not just painstakingly built over years, conversation by conversation, but is already in fertile existence, ready to grow.  For the first time in my life I am in disabled community meeting sick and disabled folks and experiencing a kind of mutual access intimacy that feels like family.  For the first time in my life, I am in relationships with able bodied queer people of color experiencing access intimacy that is beyond explanation and belief.  For the first time, this year, I am experiencing a level of access intimacy in my intimate relationships and home life that I have never experienced before.  It has been both amazing and saddening, now having something that actually cares for me.  And it, like emotional intimacy, is also a deep risk because it would be devastating to lose and requires maintenance.

Now, when I describe relationships, I include access intimacy along with my many other descriptors.  I am watching it, studying it, bearing witness to it as it grows, evolves and shifts and as I learn all the different ways that access intimacy can exist.

Reflections On An Opening: Disability Justice and Creating Collective Access in Detroit

This post was originally written for the INCITE Women of Color Against Violence blog.

This summer, Detroit was an opening for me. And not just because it was the first time that there was a Disability Justice track at the Allied Media Conference (AMC) or because of any workshop or plenary I attended. Detroit was an opening for me because I got to spend over a week creating collective access with a group of twenty-three disabled folks and our non-disabled comrades. I got to spend eight days getting a glimpse into a different world and experiencing a kind of interdependency that let me loosen my shoulders; that let me breathe.

Creating Collective Access (CCA) was about re-thinking how we, as disabled and chronically ill people, engage in movement spaces. This was about imagining something more and knowing that we had to do it for ourselves because it is so rare for movement spaces to ever consider disability and access in ways that go beyond logistics; in ways that challenge the ableist culture of our work. This was about being very clear that we wanted to shift the individualized and independent understanding of access and queer it and color it interdependent. This was about building crip solidarity. We wanted to create a liberated space. We would pool our resources: body and ability, financial, material and more. We would not just think about disability as separate from class, age, race, queerness, family, children, gender, citizenship, violence, but we would understand it as intimately connected. We would think, not just about “conference and workshop time,” but we would also think about social time and what social spaces were accessible and how we would make sure no one was isolated or left out. Because in our movements much of the relationship building, socializing and bonding is done in very inaccessible ways in very inaccessible places—we know this all too well.

It all started with need.   About a month before the AMC, access was the number one thing on our minds.  What will we do?  How will we get to food and afford enough personal attendants to come with us?  Who will push wheelchairs?  How much walking will there be?  Who will help you go to the bathroom?  How will we manage the pain, the schedule, and the pace?  Where will we stay and will it be accessible (the majority of community housing just wasn’t an option)?  How much will access cost?

We were hit with the reality of having to be in another city for an extended period of time, under intense conditions; the same intense conditions that frame most conferences.  We knew it would be long days, stretching into late nights.  We knew everyone would be stretched thin and we knew that meant something totally different for us.  We knew we could make it through, by squeezing ourselves, as we’ve done before, into ableist practices of how bodies should function and perform, but we also knew what that would mean for our bodies (and our hearts) while it was happening and once it was all done.  We wanted to be able to stay in our bodies as much as possible, take care of our disabled selves, and be part of the community that was coming together for the AMC and the USSF.  We wanted to be whole and connected to ourselves, each other and other activists and organizers—was this possible?

We started to dream: how could we use this as a way to build community, put disability justice into practice and deepen our understanding and analysis of what it means to do this work together?  What if we invited other crips to do this with us—crips who were coming to the AMC and were probably agonizing over the very same things?  What if we did community care in a way that made space for many different kinds of bodies?  What if we made a commitment to each other to move together and centered our access and care around queer and trans crips of color?  What if we tried to create the kind of world we want to live in?  We do it in our disability justice work, so why not try and create it for the time we’re in Detroit?  CCA began as a hope and a dream to make what we need.  CCA is a reflection of the courage, resiliency, and creativity that disabled folks have in the face of an inaccessible and ableist world.

The bottom line was we needed each other.  Interdependency is not a choice.  We were not going to be able to get through the AMC and traveling to another city without each other.  We didn’t know what the environment would be like, how many people would be there and what kind of access needs would arise on-the-spot, as they always do.  We would be building the plane as we flew it.  The thought of thousands of social justice folks from the left converging at the USSF was an anxiety-provoking access nightmare, in and of itself.   But we knew if we had each other, we would be okay.  Together, the three of us, three queer crip women of color, got to work.

We drafted and put out a call to other disabled folks who were coming to Detroit and who wanted to be part of a community-led access effort.  We made a blog, explaining what we were trying to do and our vision.  We were clear that this was interdependent and we invited people to be part of creating this with us.  Leah worked to get scent free information out to folks and create a scent free room, while Stacey and I worked on a basic structure for access and communication. We scrambled with three weeks to go and came up with a model of pods.  We knew the disabled people who were coming would already have some type of access plan in place and we knew it would be with people they trusted and had relationships with.  Together, each grouping formed a pod and our goal was to connect the pods to each other.  We asked people to tell us about their pod’s access needs and what they could offer and contribute.  It was broad.  Some people were able to walk and get food, others were better at coordinating; some people had access to credit cards and others would need cash to be available; some people had personal attendants or able bodied friends/family members with them who could also help with getting food, driving and pushing wheel chairs.

I had done collective access before, but with three people, including myself; or for a disability justice meeting or when traveling with one other disabled comrade.  I had never done anything like this before with twenty-plus people, half of whom, I had never met before, on our way to a city that many of us had never been to, all in a container of shifting how we understood access, past just survival.  This time, we were all jumping together.  And we flew.

We called ourselves the Pod People and we worked seamlessly together with great affection and enjoyment.  It was truly a collective effort, centered around a simple value of care.  Everyone pitched in getting food, helping to serve food, audio describing, reaching, pushing, texting, calling, asking, offering.  We schemed together to get more accessible rooms opened for us in the dorms, access to a refrigerator and the accessible shower key from the dorm staff.  Everyday, we had lunch and dinner together, no one had to worry about not being able to eat because they couldn’t get into a restaurant, couldn’t get to the grocery store or couldn’t walk far enough.  And no one had to worry about being isolated while they were eating, as often happens to disabled people when they are in movement spaces.

When there were social events, we all talked about it and had two groups, the folks who wanted to go and the folks who wanted to stay in; we made sure no one was left out and checked in about access all the time.  We stayed up the first night after dinner talking about disability and race and queerness and invisible disabilities and coming out as disabled and bodies and gender and geographic location and our struggle to find community.  Some people were just starting to identify as disabled, having never called themselves “disabled” out loud before.  Others had been doing disability justice work for years and still others had been doing this work for decades.  A lot of us were trans, gender queer and gender non-conforming, most of us were women of color and almost all of us were queer.  We formed an almost all disabled space that centered all of who we were.  Amazing.

One of the most important pieces of CCA for me was a continued commitment to move together as crips and comrades.  Every time I attempt to move through the world with other disabled folks, I am always so astounded at how hard it is for disabled people to stay together, literally.  I watch how the world separates, isolates and divides us, so that we cannot move together.  I watch how it is constructed for us to move with non-disabled people, instead of each other; and how it discourages folks with different disabilities from moving together.  Trying to move with a group of disabled people with different disabilities is very hard, takes enormous amounts of problem-solving, energy and creative solutions.  To me, one of the most powerful opportunities of CCA was another chance to figure out how we can stay together and what it would take to create a world where we understand the weight of what “access” means.  So that when I say something is inaccessible, you don’t just think “there’s no ramp” or “there are no places to sit” or “there’s no close, accessible, free parking.”  Instead, you feel. You feel the weight of what inaccessibility means to us.  You understand inaccessibility to mean isolation, shame, exclusion, disappointment, loneliness, anger, privilege, sadness, loss of community and disconnection.  For eight days, it was amazing to be with people who know what “accessibility” means; who know and feel the weight of it; and who are working to transform it.

I learned so much and was rejuvenated from my time with the pod people.  Disability requires us to re-think “independence” and how we engage in movement spaces, down to how we think, move and communicate, down to our very bones.  As movements committed to social and economic justice, where are the disabled people in our communities, organizations, bases, and movements?  Are they isolated?  How are we re-imagining access in ways that include, but are not limited to disability; that encompass class, language, gender, mamas, parents and children?  What would access beyond logistics look and feel like?  Access that allows people to not just be included, but maintain their dignity and connection to their communities?  How do we care for each other in ways that allow us to stay connected to our bodies and stay connected to each other in order to build the kind of world that can care for us all?  We are learning and trying and learning and practicing and learning again.

With my deepest gratitude to the pod people: I will forever be changed.