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.
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 AS, 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?