Well. Through a series of unexpected events, a whole chunk of my past came back and hit like a brick today. A piece that I’ve placed neatly away in my mind, like a movie or a dream or a memory. I rarely talk about it, rarely engage with it. Denial stains everything about it.
The wayback machine brought me to an old blog I’d thought lost, and I encountered raw and real and open writing. Things that I’d probably not talk about now, so openly. This bit struck me:
“For me, there is a permanent homelessness that follows in my heart wherever I am. When I think of home, residences are not the foremost visions in my mind. The essence of a home – somewhere that you know you belong, somewhere that you fit no matter what happens – this essence is something I seek. Something I have sought. An essence that is altoghether missing from my life. So while he drives and stares, my brother reads and waits, I just wonder if and when I will ever go home again.”
May 28, 2012
Nine years later, I’ve found home. I’m relieved for Jess of 2012. She found her way through everything these past 9 years. I used to seek that external home – that place I’d walk in and feel “myself”, or that person who could make it so. The essence of belonging, of being whole.
Back then, I didn’t feel I belonged in myself, let alone the world. Now, I am the world I need. I expand into the world, I inhabit spaces, learn from them, absorb them, become more at home as I expand my experiences, knowledge, mind, space. I’ll always be at home, because I have found a way to love myself, to forgive myself, to accept myself where and how I am.
It’s a damn journey, one that still makes me anxious at times. But nine years later, I. AM. home.
I have been chronically ill for 12 years. Even though I’ve cohabitated with my body in varying stages of “physically broken” during this time, I struggled, and still do, to feel comfortable using assistance I need when I need it. Yes, I encourage others to ask for accommodation. Yes, I help my friends and co-workers get what they need. Yes, I create safe spaces for people to speak about their mental and physical health struggles. Even with all of this I do for others, I actively discourage and delay myself in asking for assistance when I need it.
Internalized ableism is insidious
You see, internalized ableism is insidious. Like other “isms”, it creeps in through our media, social norms, and values. I’ve learned throughout my life to feel that if I am not capable of accomplishing, that I am fundamentally not worthy. Of love, of care, of basic dignity. Even though I do not believe this is true – I believe strongly that basic human rights are human RIGHTS – when it comes to my own existence and ability, I don’t afford myself the same consideration.
The most clear way this shows up for me is any time my invisible disability makes itself visible. I work from home, so I can hide most of my daily struggles. Further, with new and better treatment for Ankylosing Spondylitis, I experience symptoms that are far less frequent, and generally much less intense. So, when I do need a mobility aid (for example, forearm crutches or airport travel assistance), I feel like I should “just be able to do things” or “power through it”. Even though I know that using mobility aids in difficult times leads to substantially better outcomes, I wrestle with the necessity – do I really have to show people my weakness? Why can’t I just keep hiding, and then suffer later, in private?
Of course, now that life is opening up again (post-pandemic, vaccinations more available), now that I can meet people and travel again, all of these issues I’ve been able to avoid for the past year resurface. As I am meeting new people and developing new relationships, it is simultaneously exciting to have so much more ability (because medication) and also terrifying when that comes to a screeching halt (because, disability doesn’t end where meds begin). I’m facing my own feelings and judgements about my own ability. And I know that they are my own, because the people in my life have always been supportive of me, and have encouraged me to do what is most helpful for my health and life.
I’m not sure how long it will take me to overcome these feelings. To accept that I have a disability that is attacking my body, that will not always be 100% fixed by medication, that will require me to ask for and receive assistance. I’m not sure that I’ll ever feel “normal” when I need my mobility aids, even though I understand logically that they are the best choice for my body and future health.
I’m not sure I’ll ever feel comfortable, and that in itself is ableism and privilege. The discomfort I feel is ableism; the privilege is that I can frequently hide and avoid the ableism I may experience from others, or more often place on myself. I don’t understand why I am okay with others doing what they need to do to help themselves, but I struggle so much when applying the same rules to myself, and I know this is something I need to unlearn. And I wonder, do other people feel this way about themselves? Do others experience this fractured relationship of logic and feeling when they differentiate between their own needs and the needs of others?