Hello My Name is Fobazi Ettarh, and I am Disabled.

Happy New Year’s Eve everyone! Can you believe it’s about to be 2024? Honestly, I still think of the year as 2020 and 3 years later. I don’t think I’ll ever get over thinking of life in two halves-one before the start of the pandemic, and the one we live in now. In any case, as you can see by the title, I am finally fully “coming out” as disabled. Now some of you may already know I have sickle cell anemia. But for those who don’t, hello. Sickle cell is a hereditary blood disorder which causes, amongst other things, chronic pain, mobility issues, and fatigue. It also causes sickle cell “crises” where my red blood cells (which are shaped like sickles or bananas hence the name) get stuck in my capillaries and cause tissue and organ death to the surrounding areas due to the lack of oxygen which land me in the hospital.

Now, I’ve had sickle cell since birth and while most kids (62%) die before their 18th bday I’m still here! Huzzah! But sickle cell is not why I am now identifying as disabled…though it’s valid in and of itself! No. I am calling myself disabled because of a complication of the sickle cell…chronic kidney disease. Remember how I said that sickle cell crises cause tissue and organ death? Well, for me it has ruined my kidneys. And I’m at a point now where I am on dialysis while awaiting a new kidney.

It’s still very scary and vulnerable for me to say. I’ve been on dialysis/the transplant list for over a year now and it has taken me this long to finally accept that I am well and truly disabled. What you have to understand is that despite my sickle cell, I was still a fairly healthy and active person! Sure I had to take precautions but I could travel and conference and do what a lot of other people in their late 20s/early 30s could do!

But the addition of the kidney disease on top of my sickle cell has DRASTICALLY decreased my level of activity and ability. And it has been extremely difficult to accept my new normal.

I have tried to write this post at least thrice before to no avail so this is a big deal for me. There are tons of reasons why disabled people use the various words you might have heard and seen describing themselves…person with disability (PWD), disabled person, etc., and the politics of the community, like all communities, are complicated and myriad, but for me, I find using the D word helpful to kick my internalized ableism in the ass. It’s hard when you grow up a pastor’s kid (PK) – and your mom (the pastor) thinks that your disability can be “prayed away” – to remember that being disabled is not something that is going away. I think using the term chronic illness made it easier for me to pretend that I was “normal” for most of the time.

~sigh~

So. Why now? Why am I finally coming out now? Because I need your help with holding myself accountable. I’m an overachiever! It comes with being an immigrant’s kid— gotta make sure I’m doin all I can to justify my parents emigrating to a new country! And so it’s very hard for me to say no to things.

I know! The vocational awe scholar has trouble not doing too much! It’s a mess for sure. And so as we enter 2024, this post is a reminder to myself to do check-ins with myself and say:

1. yes, you are disabled
2. yes, it’s ok to be disabled
3. it’s ok to take care of yourself

And this post is also my permission to kick my tuckus if you see me doing too much! Slow and steady is the name of the game, and I would love if you all would join me in doing so! I’m turning 35 (!!!) this year, and I want to prove my first academic librarian supervisor who believed I would burnout of librarianship by 36 wrong.

It was already important for me to keep things slow and steady with the sickle cell, but if this year on dialysis has taught me anything it’s that willpower can only go so far. Your body will take the rest it needs if you don’t give it a chance to recover. So join me in 2024 in taking it slow and steady!