Practicing loving deeply, can ask us to practice being deeply present!
To love me is to see me as Disabled and Non-binary.
I have been taking my time to launch this newsletter, to sit with what I am wanting to share and say. Something that has just been the theme of this year for me, so far. From all of my childhood, to being a teen, to being in my 20’s, I hadn’t felt at home in my body. I thought I knew what being “present” in my body meant, but I didn’t truly know. I’d been somebody who meditated and followed a lot of people in the holistic realm but even with these tools in my tool belt, I was just starting to scratch the surface of what presence looked like for me. I was also noticing the ableism that took place within some holistic practitioners, which was really disheartening.
“Ableism is the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior. At its heart, ableism is rooted in the assumption that disabled people require ‘fixing’ and defines people by their disability. Like racism and sexism, ableism classifies entire groups of people as ‘less than,’ and includes harmful stereotypes, misconceptions, and generalizations of people with disabilities.” - Ashley Eisenmenger.
Looking at my own internalized ableism, I noticed things I needed to work on too in regards to the work I presented out into the world.
Imani Barbarin stated on her podcast, “Internalized ableism is so devious because we don't even know that we're taking it in. It could be the quiet comment from a relative or a friend. Things like, ‘Oh, well you're not like those other disabled people, you're actually trying,’ or things like, ‘You know, you don't need those glasses or those crutches. You don't need to start portioning your diet like that. You don't really have those allergies.’
Those are dangerous thoughts and even though they come from the outside or people that are not us, we take those in and start believing them because we want things to be better for ourselves. We want things to be more comfortable, but comfort is a privilege and we're not privileged in that way and it's sad to say that so many people think that we could never be.”
Internalized ableism is still something I am working on constantly dismantling within myself, as many other Disabled folks are doing as well. It’s deeply ingrained due to the systems we exist in. I will constantly have to check myself, purge, shift, change, because that’s simply part of the human journey to learn to love others and myself deeper. I grew up with a lot of ableism surrounding me. I had family members and friends, some still to this day, tell me “I don’t see you as Disabled” or “you’re not that Disabled.”
When we deny someone else’s experiences, we deny the chance for deeper connection. We also deny the opportunities for access needs to be met. When somebody tells me, they “don’t see me as Disabled,” they usually are the ones who don’t take the time to consider what I need as a Deaf person. To love me, to fully love me, is to see me as Disabled.
Seeing me as Disabled constantly shifts day to day based on my needs. It asks you to be present and yet, for a long time presence wasn’t even fully within myself to acknowledge these needs.
I have Nager Syndrome, which resulted in me to having various surgeries to improve my mobility as a child, a facial disfigurement and caused me to be Deaf. The syndrome is fairly rare. In December of 2020, my Mom found a journal that she had written during my childhood from birth to around age four. My parents never really shared with me the details of all the surgeries I have had due to the syndrome I was born with, nor the details of how they had to really fight systems that were trying to prevent me from having basic accommodations as a Disabled child. When I started reading the journal, I started really seeing what my body went through. The constant medical surgeries, the frequent doctor’s visits and doctor’s desires to do more work on me that ultimately didn’t happen.
Discovering this journal really sent me off into a lot of epiphanies about my body and realizing that I wasn’t sure if I had ever felt fully present in my body. In the journal, I found out that as soon as I was born I had to be taken into surgery. For all of my childhood into being a teenager and young adult, there were never any real opportunities for my body to just “be.” Everyone else had opinions on what my body should be, everyone had access to my body without my consent, which in turn didn’t make me feel like the body I had was even mine. There would be moments when I would be at a doctor’s visit and there were multiple medical students in the same room as me, just touching me and observing me because I had such a “rare case.”
In retrospect too, I realized that my deafness also played a hand in my dissociating. I had inklings of that for years, but shortly after the journal discovery I began to research how being Deaf affected how I focus and show up. I came across the term “Concentration fatigue.”
Ahmed Kalifa writes, “Concentration fatigue is a term used when your brain’s inhibitory attention mechanisms are working extra hard and it is caused when a person finds concentration hard work.
The average deaf person will have to use various attention mechanism in order to interpret and eventually understand what is said because they have to pay more attention than a person with typical hearing levels because they have to use up more of their brains’ resources when listening and lip reading.”
I rely on a hearing aid to hear as well as reading lips to pick up on what other’s are saying, with these modalities just trying to hear becomes really taxing, which can in turn make me disassociate if I don’t properly take care of it. Between the journal and the recognition of how Deafness impacts me more than just not having the ability to hear, I have been on a journey of a lot of acknowledgement of things needing to change. Not only did I feel the desire to change for the sake of being more present in my body, but I recognized that I wasn’t always the most present in my relationships as a result.
That, was a hard pill to swallow.
Since 2020, I have been slowly working with these epiphanies to cultivate change and to be more present with my loved ones, clients and myself. Part of changing meant, to deeply communicate how I operate and how I love. To communicate if I have the energy to show up. In the past my own internalized ableism had prevented me from fully expressing these needs, which rippled into isolating myself. Often times I have to constantly communicate my access needs as I have found that not everyone is going to remember the first time, which is okay. I do my best to have grace in the process of figuring out my needs, my loved one’s needs and how my loved ones meet my own personal requests. My access needs evolve as I continue to practice being present. My loved ones’s needs evolve too and practicing presence allows me to show up for them as their needs shift.
I say “practicing” because I don’t know if i’ll ever have a finish line in regards to what that looks like. Presence takes work and time, especially for those who haven’t felt at home in their bodies for so long. Not only did this journal and new information help me to start becoming a better advocate for my needs, it helped me acknowledge that I am Non-binary. Being Non-binary means being at home in my body. I am still building the interior of my home, but it’s starting to come together. To love me is to not only see me as Disabled, but it is also to see me as being Non-binary.
There are moments where I wish I knew these things sooner.
Moments where I think “this would’ve impacted my relationships a lot differently than how they ultimately panned out.” That’s a tough thought and yet, all I can do is try to be better with the information I have now.
One of my many intentions moving forward with the personal work I create, outside of my client work, is to share more of my journey to practicing presence as a person who hasn’t felt at home in their Disabled Queer body. I am committing to the practice for myself and for the sake of my relationships as well. I acknowledge that I am not an expert at this and that I am learning just like many others are. I want to be better at sharing the resources that have helped me and are continuing to help me work through things. I continue to stay dedicated to sharing stories from my experience to hopefully show people that they aren’t alone in their own journey. You may not echo my exact experience, but resonance sometimes can come in crumbs and there might be a crumb that highlights what you are navigating. I am just scratching the surface to finding out what practicing presence looks like for me and there will be times where I am still making mistakes in my practice.
Welcome to the journey!