Untitled musings, for Tinu (2024)

(Before today, the only person who I ever shared this particular piece of writing with was our beloved sister Tinu Abayomi Paul, disability justice diva and self-proclaimed “Empress of Twerk,” who has recently departed this world and joined the ancestors. I don’t know what I intended it to be for; it was just a brain dump of my thoughts/feelings/struggles at the time. I promised her that whenever I completed it, I would send her the final version as we sometimes bounced ideas off of one another. Unfortunately, I never returned to the piece to finish it/clean it up, and now she is gone, so she will never have an opportunity to read it. As I haven’t really known how to grieve her passing/honor her life, I decided today that this could be a small way to do so. So I am publishing this - knowing it is raw and rambly - as a tribute to our dearly departed sister.)

Support her family with a donation: https://www.gofundme.com/f/honoring-tinus-legacy-with-compassionate-support

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Echolalia is my thing!

So let me share some scripts that used to run through my head regarding how I perceived others felt about my appearance.

Hysterical laughter followed by the following utterance: “You sho is ugly!” (Source: Scene from the initial Color Purple film)

“…so dark that when the lights are turned off, the only thing anyone can see is your eyes and your teeth.” (Source: Retorts overheard in dialogue between various African American youth in the US South)

“A face only a mother can love.” (Source: Colloquialism heard and read in various television sitcoms and fiction novels)

“Heart throb? Never. Black and ugly as ever…” (Source: Excerpt of a song from deceased musician Christopher Wallace who was also known as the Notorious BIG)

“…she fine, but she look like Lassie.” (Source: Excerpt of an old rap song)

“Hair so nappy that cornrows look like stitches.” (Source: A “Your mama” joke that appeared in an African American television sitcom)

“It must be your coochie cuz it ain’t your face…” (Source: Excerpt of an old rap song)

“She blacker than a mf too…” (Source: Remark made by a character in the movie Friday)

“You’re so lucky you got all that hair like your mama! Cuz you got a big ass nose and big ol’ lips just like your daddy.” (Source: A statement made to me in my youth about my hair length and facial features as by an African American hair stylist, who intended it as a compliment.)

I could probably go on, but I’m not interested in scrolling through my memories for more self-deprecating recollections. 

Please know that I am aware that many (all, really) of these quotes are based in problematic biases including but not limited to anti-Blackness, colorism, featurism, texturism, misogynoir, etc. Please know that I do NOT internalize these thoughts (though when I was younger, I once did, if I’m being 100% honest). Please know that I don’t approve of these kinds of statements and that I do not speak about myself nor others in this way. 

Please also know that “glow ups” are also very real, and in various periods of my life I have had a plethora of suitors whose perception of me was quite the opposite of all of these remarks. I cannot even recall the number of people, from the penniless to the multimillionaire (no cap) who have perceived me as extremely attractive and have gone to great lengths as well as enormous expense to demonstrate as such in their efforts to win my affection. They thought I was gorgeous and several even considered me to be "eye candy" or a "trophy" girlfriend. (Which is very shallow, but that's how they felt.)

Although there is definitely merit to the concept that “beauty is in the eye of the beholder,” there are also societal standards that shape what is and is not considered attractive, often heavily influenced by Eurocentric values. I have been aware of that since I was very young. It sucks, but it is what it is. There are also many different ways beauty can be manifested, some of which have little to do with one’s exterior appearance. I’m simply describing my experiences -  not necessarily declaring them to be representative of anyone else’s (though I suspect they are for at least some people).

This context is important because of how it relates to me as a person.

Humans can be incredibly cruel…children as well as adults. People seem to thrive on hurting others; perhaps they feel that doing so increases their own self-worth? I have never understood it and will probably never understand it. But I recognized it very early on, and this knowledge was essential to my survival. What I knew to be true of humans is that practically nothing was considered “off limits” in the game of life. Every aspect of your personhood was subject to scrutiny and possibly attack: your looks, your sense of style, your finances, your intelligence, your family, your heritage, your religion, your friends, your interests…everything. Nothing was sacred.

There are forces in life that operate very much like scavengers; they draw life from devouring the weak and wounded. Specifically regarding the topic of perceived attractiveness or unattractiveness, this is an area where others’ words can create a significant amount of harm. We’ve seen how even public figures who are revered for their beauty have been devastated by criticism of their appearance. It seems that honing in on all the millions of potential flaws in someone’s appearance is one of the best ways to destroy someone. As such, people do it often.

When they try to do it to me, however, I laugh inwardly at their foolishness. It happened (again) recently, and though it was certainly a valiant and spirited effort, it was a colossal waste of time and energy.

You might be wondering why that’s the case. The answer is quite simple: 

It isn’t possible to hurt me by attacking things that have little value to me.

I can be all kinds of ugly-wide nosed-big lipped-dark-nappy haired-crooked teeth-fat-whatever you come up with.

I can be all kinds of poor-low class-economically disadvantaged-at risk-less-fortunate-whatever you come up with.

I can be all kinds of weird-quirky-awkward-“special”-crazy-whatever you come up with.

I can go on, but I’m sure you get the point.

People can call me any/all of those things. While I certainly won’t pretend that I would find it pleasurable, I can guarantee you this: It ain’t going to hurt me a bit. Like not even a fraction of a millimeter.

Because…I DON’T CARE about those things.

I don’t place value in those things. They aren’t characteristics that I feel pride in. There’s nothing wrong with someone being attractive, wealthy, popular, socially acceptable, whatever. That’s good for them, I guess…but as far as myself, I truly dgaf about any of that. To me, they’re like extras. Nice to have, but not needed. Criticizing me for those things doesn't hurt me. I like my skin tone. I like my wiry hair and my full lips. I like being curvy. I like my neurodivergent uniqueness. (I don't like the way my bank account looks, but it could be worse; I'm good.) Etc.

These seem to be the things, however, that people immediately jump to when they’re trying to hurt someone. Attacking their appearance, their social standing, their socioeconomic status. It seems to be a successful tactic in breaking down many others.

It doesn’t work on me.

But you know what?

Most people aren’t observant enough to pick up on that. And I’m certainly not going to tip them off that they are fighting a losing battle. So they lean in with all their might to unleash the most vicious attacks they can, concentrating on those areas. And I go ahead and let them waste their time and energy. They come up with some very creative stuff sometimes; it can be amusing.

When they run out of steam, criticism, and cruel statements, I remain just as I was before they wasted their time: still me. Unphased. Unbothered.

Undefeated.

But now it seems that a foe equivalent to Superman’s kryptonite has emerged.

And the victory I have enjoyed all these years, from the time that I was very young until now, is threatened. 

And unlike the people who wasted energy taunting my appearance, my autistic weirdness, and/or me being “working class”/poor, this foe has gotten to me. This foe has several successful skirmishes under its belt. This foe will ultimately win. Knowing that, what am I supposed to do?

There are so many qualities that make up a person, and everyone has the right to take pride in whatever they choose. 

Some people are enamored with their musical ability; their athletic agility; their quintessential femininity. 

Some people value being dependable, or being successful, or in their work ethic. Some people take great pride in their creativity, or being a good friend, or in amassing wealth, or in being a parent, or in their culinary skills, their artistic flair, their knowledge of multiple languages, their body count, their possessions, their social media following, their education, their spirituality, their eye color…any number of things, and likely a combination of those things.

My “thing” was my brain. My mind. My intelligence. I felt it housed the “true” me.

I love learning. It’s a lifetime “special interest”/intense focus/passion that has never waned. I am that annoying person who finds fascination in even the most mundane thing (considered mundane to others, anyway). I have a million “interesting factoids” in my head about the most random things because I just derive so much joy from learning new things and/or deepening my existing knowledge. I have always been like that. 

In part, it might be due to privilege, as I am twice exceptional (“intellectually gifted” + disabled). Multiply exceptional is probably a more accurate description in my case, but that’s a discussion for another day. I knew how to read without being taught as a toddler. I was in the gifted classes and all that. MENSA, all that. So maybe my advanced cognitive abilities contributed to my deep love for learning.

But I don’t think that’s the full story. I think I would still have a strong yearning to know more and nearly insatiable curiosity no matter what my so-called IQ was. I think it’s just how I am built. I have always been this way. I truly don’t know how to explain it. It’s just a part of who I am.

Only it is gradually becoming less a part of who I am and more a part of who I was.

My name is Morénike, and I have what has been described as a “prodromal” form of early/young onset-dementia. The formal name is mild cognitive impairment (MCI for short) and it is classified among various neurodegenerative conditions. To my knowledge, I am not genetically predisposed to Alzheimer’s/dementia/related conditions, but you don’t have to be.

I have been grappling with the realities of my diagnosis for a few years now. In doing so, I have had to face my own internalized ableism. Unbeknownst to me, I had made my brain/mind/intellect almost into an idol of sorts. Not in a malicious way, but it has been the thing I could always rely upon. The thing that helped me compensate for all the other areas where I was clearly lacking. The thing that brought me understanding, and joy, and fulfillment. In many ways, I felt it has been the thing that made me “me.”

Who am I without it? 

It’s very sobering to wake up in your own bed in the home you have lived in for years, but not recognize where you are. You are instantly filled with dread and your heart rate increases. You sit up and open your mouth to shout for help. But you cannot, because you cannot remember the names of your children to call out for them. Or you do not even remember that you even have children to begin with.

It’s sobering to have to impose rules upon yourself or to need supervision and/or support from others - even your elementary aged child at times - to do things you were once able to do independently. You must have this level of involvement to prevent injury or loss of life. Because on your own, you will try to boil water but forget that it’s there until there is a fire in the kitchen. 

And you will accidentally flood the bathroom because you left the tub running. 

You will walk out the front door to check the mail, but instantly forget where you are and why you are out there, and will instead wander off someplace. 

You will feel the urge to relieve your bladder and will head to the toilet, but once you get there you can’t remember the steps (pull your clothing down, sit, void, stand and wipe, throw the tissue in the toilet, pull clothes back up, flush and wash hands), so you stand there fully clothed feeling helpless and confused as urine leaks all over you. 

You will lose the ability to drive much of the time because you mix up the park, reverse, and drive controls. 

You will be in a Zoom meeting or on a conference call and suddenly be completely unable to follow the conversation that a moment ago made perfect sense to you. 

You will be in the middle of an email and suddenly cannot remember how to spell a one syllable word despite the fact that you have a PhD and have practically been a walking “spelling bee” your entire life.

All of these things, and others, will happen numerous times.

They will corroborate what your MRIs and cognitive testing have revealed.

That you know longer had the aptitude you once had. And now you have to adjust to a new reality.

One where you are NO LESS of a person, but you are a very different person than you are accustomed to.

But I don’t know how. I don’t know how to let go of something that has brought me so much fulfillment and joy. I find myself getting alternately saddened and frustrated when I can’t understand something or make myself understood. People sometimes wonder why certain people might engage in property destruction, self-injurious behavior, aggression toward others, etc., and while I cannot speak for anyone but my own self, being constantly unable to express yourself and having diminished autonomy over your own life is devastating and can certainly evoke a desire to lash out in a desperate attempt to try to have control over SOMETHING. Or because you are about to implode from everything you are dealing with and you don’t have other outlets. Or you might not even want to do certain things, but sometimes your body feels like it’s out of your control.

All people have value. I believe this deep in my very soul. And yet, I don’t know what to make of this new reality. I am fortunate that even as my cognitive abilities have decreased, because they were so advanced to begin with, they still exceed the status quo…for now. But the decline is evident, and no one knows if it will continue, if it will remain stable, if it will improve. And the clinical trials tend to be for people who are significantly older than I am; the inclusion criteria doesn’t take into account that some of us start experiencing this long before our elderly years.

I am changing. I need to embrace the new me, and be okay with the idea that she is not smart. That in five years she might not know how to read any longer or know her own name or how to feed herself. I need to show her love, and grace, and I need to see how wonderful she is even if she doesn’t have this vast pool of knowledge to draw from any longer.

But I don’t know how.

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Recommended citation: Giwa Onaiwu, Morénike. (2024). Untitled musings, for Tinu. Just Being Me...Who Needs "Normalcy," Anyway? [Personal essay.]