More reflections on ADHD, ableism, and a real life example of stigma/shaming that happened last month.

by fxwrk

http://www.huffingtonpost.com/entry/adhd-brain-disorder-study_us_58af2326e4b060480e05c139?kwp_0=345868&kwp_4=1303323&kwp_1=578656

Thoughts on the latest ADHD studies which apparently prove that our issue is neurological:

I am, by far, the most “severe” case of Inattentive Attention Deficit Disorder I have ever known, and very likely the most extreme case you have ever interacted with in your life, although you can’t really tell on the surface. While they are often co-morbid, it’s not directly comparable to depression or anxiety, as those are primarily situational or trauma based: you’re not born depressed or anxious. I was born with measurable brain differences that are interpreted as evidence of an incurable disease in modern society. My differences make the basic capabilities of *adulthood* extraordinarily difficult on an ongoing basis. The effects don’t come in cycles, there is no ‘onset’, there are no episodes, no major or minor. According to the scientists and the doctors and the looks on certain people’s faces when your ADD decides to show itself like a perpetually reoccuring nip slip, you’re just broken. From the day you are born, you are broken. That is the paradigm, and many of us who face serious ADD feel like our fate is to feverishly tread water with deformed, weak, ‘too different from other people’ limbs, forever. (Stimulants do not work on everyone, are not available to everyone, and for some like myself, the costs outweigh the benefits. I like having a full range of emotions and I do not like random fits of agitation and rage, personally. Thats why I had to stop. Meds are not a one size fits all solution.)

People generally have no real idea what its like, how far reaching the effects are, and how maladapted we are for survival under late capitalism. As a black woman with the personal backstory I have, my efforts to survive and thrive are thwarted even more by my identity, my biography and my relatively low standing within most social hierarchies and power structures. Ancestry of slavery, segregation, poverty, abuse, addiction and dysfunction, no generational wealth, very little family support, a personal history of extreme trauma, working in an industry with an insanely high glass ceiling for women, and the list goes on. ADHD voices are so unheard and misunderstood in general, but black, poor female ones far more so. Black women with so called ‘mental illness’, living at the axes of multiple oppressions, are among the most unheard and disregarded voices there are in America. Are we broken? Or are the systems that drain our life force and invalidate our existence, themselves, broken?

On the one hand, studies like the one in the link above help people like me who struggle relentlessly, perpetually, with things modern adults are expected and generally able to do. They help because they convince the neurotypical population that we ‘really’ do have a ‘brain disease’ that is not our personal ‘fault’. Therefore, they combat stigma and make it so that my lived experience is less of a culturally invalidated, tragically misunderstood, interpersonally denied and stigmatized situation. However…they hurt too, because, at the end of the day, my very real neurobiological differences are only pathological/ abnormal in the context of a deeply unnatural, insane, programmed construct called modern society, in which neurotypical brains are the norm and the standard and, I must admit, less threatening to the way things are, which is why there is no diagnosis for that. ADD, for some including myself, means not being able to force ourselves to do things even with the risk of massive consequences. Many of us are motivated almost entirely by inspiration, desire and personal interest in a subject matter or an activity. Kind of like children. Free. Too free, too driven by what is within rather than by the hard, blunt edges of ‘reality’ that exist without. (Is that reality?) Survival, quite literally, does not fire up my engines, and I only recently accepted it and stopped hating myself for it in 2016. I have had to pay for it in too many ways to count. Fear doesn’t work very well to get my switch from off to on, which is why people like me HAVE to get a psychiatric label and drugs to change who we are, you can’t have a bunch of people running around who can’t figure out how to motivate themselves off of humanitys base survival instincts and modern conditioning! Fuck no. And dear God, if people started looking into the mirror of our inability to conform and realize how much they too, deep down, struggle to conform and live in this fake construct, shit would fall apart. We most defffffinitely cant have that. *Cue endless studies about our ‘broken brains’ and 10 million adderall prescriptions for ten year olds in America who cant pay attention to brainwashing at school for six hours a day*

A quote from the incredible mind of John Taylor Gatto is relevant here: “School is about learning to wait your turn, however long it takes to come, if ever. And how to submit with a show of enthusiasm to the judgment of strangers, even if they are wrong, even if your enthusiasm is phony.”
John Taylor Gatto

Back to my own experience. I am damn near incapable of submitting myself to boredom or routine, my brain tends to switch off when I see through something false and can’t give my energy to it, when someone is using words just to fill a void they mistakenly think exists outside of themselves, or when I just don’t care about something and do not see its relevance to my personal mission, even when I try really, really, really, really hard to stay focused. Every job, lost within months. Every single one. Multidimensional is a good word for my brain, I often feel like my consciousness is present beyond the physical levels of consensus reality. Sometimes I am outside of time, sometimes I am in a hyperfocused trance of no-time, sometimes I am deep in my own subconscious, sometimes I am in a whirlwind of other people’s thoughts and emotions, sometimes I am so present I cannot help but behave completely spontaneously. A few times, I have actually ‘left’ my physical body and my consciousness traveled to the past or the future (being an intuitive/claircognizant is part of this). Lots of ADD’ers have these gifts of expanded consciousness and are not naturally grounded into 3 dimensional reality because our role at a soul level is to be both in this reality while not being of it. Many of us are portals, bridges to the beyond, who are able to bring the spiritual down into the physical and merge them through the activities that light our brains on fire and put us so deep into hyperfocus we become unaware of our physical bodies, of time and space, of where we put the keys, of the fact that we forgot to pay the phone bill. My ADD brain gives me really awesome powers tbh, which the world needs badly right now. It’s sacred, but everything is inverted here in duality, so down here, we’re ‘sick’ and need to be fixed because we can’t keep most jobs without neuturing ourselves with therapy, stimulants and internalized shame.

I am terrible with things like money, turning my gifts into profit, and navigating the strange, fear based world of any capitalist industry at all. I can write my ass off, I was a child prodigy in a couple of ways, and last year I stumbled into leading an international collective/movement online among other things, but knowing how to monetize my mind and turn the contents of my soul into profit? It’s like trying to learn sanskrit from a braille textbook. I make sense in a village where man and nature live in harmony, where villagers do not have to learn how to ask if they can go pee in schools, or get office jobs, or pay rent to an owner of a piece of something that belongs to everyone, every month. I don’t make sense in the world as it is, and it doesn’t make any sense to me, but that is probably the most important reason why people like me desperately need to exist: to remind other adults that this shit isn’t really honoring their soul or working for them, either, even if they have forced themselves to function well within it and stake out a little place in this mess for themselves, thereby procuring a little piece of security and safety in a world gone mad. If everyone easily kept jobs and payed rent every month and effortlessly focused their attention on whatever we are ‘supposed’ to focus on, we’d be hurtling towards an Orwellian/Huxley’esque dystopia even faster than we already are. My *broken brain* has a forbidden, uncontrollable magic in it, and for that, I pay dearly on the physical plane. For that, and for my inability to tame it and get with the program, I suffer. Ideological warfare on the too wild, too free and therefore dangerous human spirit.

Living as someone like this is difficult in ways I’m not sure words can express. I once stayed with a man who was abusing me for months because I had no where else to live and between being abused by a sociopath and the way my brain works no matter how hard I tried, it was really, really hard to acquire enough money to get out. I can’t even sit and search for jobs on craiglist for more than fifteen minutes without getting completely distracted and having to yank myself back to the task at hand, over and over and over and over again (then attention fatigue sets in and I fall asleep from the strain midday.) I have lived on people’s floors surviving off bagels, I have relied on food banks, I have lived in a dirty, illegal loft with ten men, I have slept on the train, I have gone from couch to couch, I have been shamed so deeply for my struggle to survive and navigate NYC as an adult, I have been fired a million times and sometimes with harsh words (one boss told me I need an ‘interface’ to deal with reality, obviously equating my differences with a form of mental retardation, even though my IQ probably eclipses his and definitely most people’s, by a large margin.) My parents kicked me out onto the street because it took me longer than a month to get my shit together after taking medical leave from Wesleyan, although it was obvious I was clinically depressed and could barely eat/move/think about working. As far back as middle school, reports all reflect the same thing, that I have an incredible mind but I am just not good enough in the ways that it takes to succeed within institutions with strict expectations for how my brain should work, I am not living up to my potential, etc etc. Professors at Wesleyan loved me because I made their classes less boring by not riding their dicks and actually challenging their ideas, yet I just didn’t make it to graduation after more than three years of trying. The actual impact of being this way is SO FUCKING REAL and I want people to know that, for my sake and for the sake of millions who deal with this.

Now: a real life example of what it is like to face ableism and stigma and non-belief as someone with severe ADHD.

I’m going to bring up Neybuu again. Neybuu (apparently her real name is Renae or something) is a white woman, a music producer, who came out of nowhere to demean me last month in an extremely random and deeply ableist way. I run a rapidly growing global collective of women/nonbinary folks in the hopes of changing gender inequality in electronic music, and it is a great deal of work, which I explained two posts below in an essay about the situation. I am someone who is motivated by a desire to change how things are, not by a desire to thrive within them, although I try very hard to do both but tend to fail at the latter. Thriving within the old system/doing what I have to do to because ‘you just have to do it’, is insanely difficult for all the reasons I described above, and has never actually worked for me, ever. Not every adult can say that. I have never had financial security, ever in my life, childhood or adulthood. Not for longer than several months, even in college. Normal brains can keep a job, can scrape rent together, can devise a long term structured survival plan and stick to what it takes to make it happen. I taught myself how to read at three, but at 23 I was living on someone’s floor, hating my mad whirlwind of a mind and how it always seems to make me pay dearly for the ways in which I cannot change myself or adapt to the construct that is modern American life under late stage capitalism.

When I asked the group I run (SISTER) for help so I could possibly eat more and be a bit less malnourished while doing work, every day, for an incredibly unique and important movement in my industry meant to uplift and create space for women around the world who are marginalized in our field, more people than I thought would respond immediately responded with love and willingness to contribute to me not going so painfully without, like I am used to. I was so proud of myself for having gathered the courage to acknowledge and respect my differences and limitations, to ask for help after a year of genuinely hard work, for having the courage to reach out and ask people to acknowledge the value of what I am trying to do, outside of the context of a master/slave capitalist work arrangement. One of the members commented saying ‘we should definitely help you out, you do a lot for us’ and 20 people liked it in two hours. I was like wow, maybe this thing I pour so much time and energy into can help me not struggle so relentlessly like I have since forever.

And then, lo and behold: a white, presumably able bodied/neurotypical woman who had read my long, heartfelt, incredibly vulnerable post to the group I have nurtured from its early days decided that she had to step up and stop me from my apparent attempt to ‘capitalize off disenfranchished people’, ‘charge’ them to stay in the group and threaten people for money like a manipulative, dishonest person would do. She wanted me to realize that ‘real labors of love don’t get compensation’….(huh? She had clearly read my post about being in a financial emergency and losing weight, and wanted to block me from getting support to get out of that situation? Who does that?) She told me that she has been able to make money and survive without a normal job and that she could offer me suggestions on how to do that, and ended with offering to take over what I have built brick by brick while vowing not to ‘charge’ the members (which I never did and was never going to.) It was horrible, because it was a strangely aggressive personal attack on a black, intensely neurodivergent woman in a clearly vulnerable and painful position, based on complete absence of understanding of who I am, what my intentions were, my story, and what it means to ask for help within a community that knows you, cares about you and values your existence. I technically have a severe neurological disorder….why would anyone drag someone who was brave enough to admit to to that?

Ableism, and stigma, and people not believing you and blaming your struggle on your character or on personal shortcomings. I told my story so honestly, and a white woman came out of nowhere to attack my black ass for it and shame me for speaking out and asking for the support I truly do need and deserve. This is a real life example of ableism/neurotypical privilege in action.

She got angry after I deleted the attack so she put it on our public page within five seconds, to ‘get back at me’…..it was bizzare. If she wanted to help me, why didn’t she message me? Why attempt to shame and ‘call out’ and embarass me in front of other people? Why post on our public page, where there are hundreds of non-members, in the attempts to get attention for something that was apparently meant to be of personal help to me? I have since flipped my weave and gotten over it, (lol) but at the time, I hadn’t felt so angry in years. I was in absolute shock, and even more in shock when she posted it on her page, my name included, and messaged me to thank me for all the attention she was getting from the post….(!)….all because I asked if people would be willing to help me fight the real life effects of severe ADHD so I can continue to run our group and do good for others around the world.

The ableism in her narrative about me was astounding. If someone had cancer and had put love and energy into something meant to benefit others for an entire year, while suffering from the effects of her cancer, and she made a gofund me for help with hospital bills and posted it in her group, no one would come out of the woodwork and accuse her of trying to use and scam others. No one would demean her character and reduce her desire to survive to a baseless, manipulative scheme. No one would offer to replace her without having ever had a personal, one on one conversation with her. No one would respond to her in a way that completely wrote her cancer out of the equation and blamed her inability to pay her hospital bills on her own lack of making the right choices. No one would tell her “when I was sick, I payed my bills without asking people for money, so you should too, and I can give you suggestions on how to do that.” Her words reeked of really, really bad ableism and an intense disregard for my plight and thereby, the plight that all people diagnosed with this go through. ADHD, the severe kind like I have, is not a disease in my opinion, like I explained above, but its still a painfully real and huge difference which leads to the kind of inability to support oneself that I have faced for my entire adult life, to an extent that is absolutely anything but normal. I know we’re all paying our individual rent every month in this alienated, atomised capitalist society, but I believe in community and I believe that people should reach out to people who care for help more, to each other more instead of to institutions and writers of paychecks, that people should help each other more, emotionally, financially, however. You shouldn’t shame someone for struggling so long and so hard that they shoot down their pride and ask people to help them. You shouldn’t tell people their labor, their effort, their love, their energy, is worthless. You should not assume that someone you do not know has the same abilities as you do. That is stigma. That is shaming, that is harmful, that is ableism, that is really messed up, especially if it’s a white woman doing this to a black woman in America…..context.

I hope that new research that comes out helps people to realize what people like me go through, how we lack the abilities most adults take for granted and assume everyone has. We don’t. A lot of rich ADD’ers end up with life coaches, expensive life long medication, multiple therapies and all kinds of support, while lots of poor POC ones end up dead, homeless or locked up somewhere. The research is out there if you look. I hope that new research reduces stigma so that the cancer patient and the severe ADD’er are both looked at with love, understanding and kindness about their limitations. I hope this woman realizes one day that a white person attacking and shaming and lying about a black woman who is simply trying to survive and brave enough to ask for help from people she has helped, is extremely problematic and hateful especially given white supremacy and racism…..I hope she realizes that when I deleted her post, it was coming from a place of intelligent awareness of the defamation and barely hidden vitriol that came through so clearly in her original attack, which her friends somehow didn’t see the same way (they wanted me to think she was being ‘nice’ and trying to ‘help’….really? Please.) I might have an extreme brain difference, but I’m extremely intuitive and not stupid in the slightest. Whether they will admit to it or not, the energy emanating from her original words was condescending, cruel and unwarranted , and I will never sit here and act like it was not.

To everyone with ADHD or any inner difference defined and treated like a severe neurological disorder, I love you, and you deserve to survive!!! You do need more help than the average person. Your limitations are a mirror for others to look in and more easily admit their own. Your inability to survive as an individual unit forces you to rely on either your community, or on the state, and when you choose the latter, you make social reality a little less cutthroat and isolating because you are a reminder of how unnatural the way we live is. No, you are NOT equipped to survive this bullshit, but that doesn’t mean people should shame you or that you deserve to wither away. I believe you, I see you, I acknowledge you, I applaud you for rising above your struggle, or just admitting to it and taking up space in the world, as you are. I will do everything I can to help tell our story as I continue my creative career.

c

 

 

 

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