I think a lot about the position of many older folks when they describe how “bad they had it” or how hard their younger lives were when justifying why they don’t think accommodations or care should be given to people presently suffering from a disabling world. I think it is a very defensive thing to say and to assume that if someone gets access to what they need, it will somehow be taken away from someone else. 

The first time I heard someone explain “zero sum thinking” was in a podcast that one of my favorite people, Alok Vaid-Menon (they/them), was featured on. They spoke in the podcast about cis peoples’ reactions to trans and gender non-conforming people existing. Alok explained that when trans people ask for basic humanity and respect, cis people view it as an “attack from a zero sum ideology that makes you think that if other people thrive, you must somehow lose something.” I recommend listening to this episode, I have probably listened to it 10+ times and forced my dad to listen to it on a car ride once 🙂 ! 

The term “zero sum ideology/thinking” that Alok used throughout the podcast exactly encapsulates my thoughts from the first paragraph. I think this sort of reaction can apply to many different marginalized identities, especially those we have been discussing in class in the recent weeks. A lot of times communities that society has disabled have to do a lot of extra work to create support structures that work for them. Because of the extra care they give to themselves and the thinking required to meet their specific needs, often times their curated support structures benefit them in ways that our society cannot achieve even for those it was built to favor. Zero sum ideology I think is more a reaction to the mirror that these communities hold up to the privileged. For example, someone might be frustrated by the fact that people with autism get to take breaks from work to recover from overstimulation, that trans people can wear whatever they want outside and still be treated normally, or that someone with a chronic but invisible disability does not have to give an excuse each time they need to work from home or take a day off. The frustration that someone would experience from this seems more to me like they are realizing that they would also benefit from similar accommodations/treatment to what these people have been given. However, it is super hard to come to terms with the fact that you have not been treated right by others or treated yourself right, and the introspection that it takes to understand your negative reactions is much more intense and uncomfortable than remaining complacent and following the status quo.

I can’t write when I need to.  I can’t take my thoughts and put them onto paper.  I can’t do this assignment.  I have things to talk about.  I’ve already talked about them.  Can I talk about them again?  Some people get mad when I repeat things.  I’ve learned to stop repeating things.  People don’t like repetition.  They don’t like to repeat themselves either.

I have things to do.  I need to get out of bed.  It’s morning, I have class in two hours.  It takes two hours to make coffee, breakfast, get dressed, and brush my teeth.  I feel like it doesn’t take this long for everyone else.  My parents and sister never understood how I took so long.  We didn’t know I had ADHD.

I don’t think my mom wanted to know.  She took me to Jewish social services when I was in 5th grade so they could evaluate me for autism.  They said I didn’t have autism.  

They said they thought I might have ADD.  They couldn’t evaluate me for ADD.  It’s not ADD, it’s ADHD.  My mom knew.  She didn’t pursue it.  

She’s a substitute teacher.  She’s seen kids with ADHD, young kids, get prescribed heavy medication.  That’s what the doctors prescribe.  That’s what the other teachers want the kids to take.  She didn’t want me on medication, said it would permanently alter my brain chemistry.  She was scared.

I don’t think medication was necessary in my case.

It would have been nice to have other accommodations though.

I think I might need medication now.

I was almost 18 when I got my diagnosis.  I found out my older sister got diagnosed with ADHD too, a few years before mine.  I didn’t know about it.  They never brought it up.  They were in college.  Mom didn’t mention it.

Or did she?

I can’t remember.

My clock is set 5 minutes fast so I get to class early.

I show up to class 5 minutes late.

It’s 7:30 pm.  I should find a place to wrap up my homework so I can start heating up a frozen dinner.  I don’t have the energy to cook.  Cooking from scratch takes hours.  Cooking takes longer for me than others.

It’s 8:00.  I should eat.  I’m no longer working.  I’m sitting at my desk.

It’s 9:00.  I need to eat.

It’s 10:00.  I still havent eaten.

It’s 10:30 and I’m finally starting to heat up dinner.

I finish eating at 11:00.  I still need to shower.  I won’t get into my bed if I don’t shower, because I don’t want the sheets or blankets to get dirty, because I don’t want to clean them.  I can’t clean them.  I have a washing machine.  I just can’t clean the sheets.

I need to sleep.

I need to get into bed.

I can’t leave my desk.

I’m going to do this tomorrow.

It’s tomorrow.

To preface this post, I’m sorry. I had hoped, by now, I could write something easier and more digestible; something that could get you all your two comments and we’d both be on our merry way. Instead you all have been subjected to learning about me, my family, and the things I keep in my mind whilst we are on this process of discussing the body. I hope you all don’t mind. 

To begin, as I’m typing this, I am racing through so many thoughts. I’m flipping through my journal, trying to string together thoughts to say. I want to talk about my family. I want to say how we never talk about chronic illness. In our home, it’s akin to cursing, to say you are sick and need care means more defeat than strength. As I was thinking about how to write something, I found a poem that gives me comfort, When You Believe Your Body is Your Enemy by Andrea Gibson. I could not tear my eyes away from these lines: 

The soul misses every single day the body was sick,the NOW it forced,the HERE

It built from the fever. Fever is how the body prays,

How it burns and begs for another precious day.

When I read it, I am reminded of the courage it takes to face illnesses; to persist regardless of ability.  I hope you can read this poem, and find something in it too. 

I am lost. I want so badly to live in this ideal world we create in class during discussions; radically shifting the nature of society. How nice would it be to have a campus built for accessibility: ramps instead of stairs, class preferences that work for everyone, universal understanding of neurodiverse needs. To know all the answers to everyone’s problems, to find ways to solve them. In our class world, spoon theory has no place; everyone has more than enough spoons to handle whatever it is they need and still have more leftovers. The dismantling of systems of oppression is done; everyone sings, and we all go home. The most unfortunate thing is, this is not reality. We all have to face it and go through; the important thing to remember is that we are all facing it and going through it. People are not as cold as we perceive them to be. There is light somewhere, if you’re willing to see it. 

I wanted to include here a note I had on Autism; A short defense of Applied Behavioral Analysis therapy. I don’t really care too much for the practice myself, but it is helpful. You do not typically take your child straight to ABA; they are tested, referred, and treated according to their individual needs. It is therapy like any other, and comes with all the same complications as finding an appropriate therapist and dealing with the burdens of insurance. It is easy to forget that not everyone knows as much as we do; it’s a privilege to be here in college with access to resources but parents need grace. To be in the process of unlearning harmful stigmas about their child, learning processes to better support them, amidst all the other things that come with supporting a child in one area of the spectrum is hard. It is daunting. I have watched it first hand, and support my own family in navigating this process with my own sister. I must reiterate it as many times as I can: this is hard, ABA is not the best, but it helps in treating severe functioning issues. Functioning, in my mind, is not exactly synonymous with normalizing. To be normal is to conform with societal standards. To function is to be able to take care of yourself and communicate your needs.

I have been in an ABA research lab for almost two years now, and what I’ve learned is that… I don’t really like ABA. At least not some parts. I was very apprehensive to start out because I had an awareness of its ethical implications. From the start I had an issue with the label “problem behavior.” This term essentially refers to behaviors that an autistic kid has that are disruptive to the study or task being conducted. The child might be disruptive, loud, or unable to sit still. To me, problem behavior presumes that autism and autistic traits are inherently bad or troublesome. This has obvious implications for how people view autism. They might see autism as only problematic and challenging. There are also implications for how autistic people, especially kids, view themselves. ABA is usually conducted with toddlers, so imagine being like 3 or 4 and thinking that you are a bad person because of the behaviors you were born with. Imagine thinking your identity is not only different, but disruptive and problematic. Something to be contained and taken control over.

In our lab we thankfully don’t use punishment but we very often implement reinforcements in the form of praise or tangible and edible items. These reinforcements are given when the kiddo has done something correct. For instance, if they answer a question accurately on their own they could have 30 seconds of play time with their preferred toy. In other words, reinforcement is contingent on the researcher’s normative rules. The kiddo gets praised when they behave “correctly.” This teaches autistic kids that they will only be accepted if they suppress their behaviors to achieve a more normative and compliant exterior. They are taught that their autistic traits are just problem behavior that will not be rewarded. I can imagine that this instills a sense of shame in autistic kids simply for existing. I also wonder if autistic kids must develop self-consciousness at an earlier age than neurotypical kids in order to mask and adapt to societal norms. Reinforcement is never given with the intention of validating autistic traits and strengths. In general, ABA emphasizes autistic challenges over autistic skills. I can imagine that ABA would be much more beneficial if there was a value placed on centering autism as something to be celebrated rather than only focusing on a set of behaviors that need to be fixed.

When we as a collective learn to accept autistic behaviors rather than try to change them, we are taking strides in dismantling what it means to behave “normally”. When we understand what autistic people need by listening to them rather than listening to everyone around them, we can create an environment that is accessible for autistic people to safely navigate the world. And when we center autistic strengths rather than continuing to infantilize autistic behaviors, we are reframing autism as a celebratory and lasting aspect of identity, all while acknowledging structural changes that must take place.

My husband and I have done so much work trying to destigmatize mental health needs with our kids. We are a blended family, and therefore the foundation of our marriage is unfortunately filled with trauma from previous relationships. We knew early on that our kids would require therapy of some kind to work through the pain and disappointment that often accompanies divorce. When our daughter (his youngest from his first marriage) began to exhibit behavior issues both at school and at home, we assumed that it was her way of processing how hard it was to go from one house to another. She thrives on routine, and spending one week with her biological mom and brother and then one week in our full house of seven was really hard for her. I mean let’s be honest – that would be hard on anyone, let alone a six year-old. After a year of trying all the tricks we knew, we sought out professional help. Shortly thereafter, she was diagnosed with ADHD and Oppositional Defiant Disorder. It wasn’t really a difficult diagnosis to swallow because she pretty much checked all the boxes of that disorder according to the Diagnostic and Statistical Manual of Mental Disorders (the holy grail of mental health professions). They sent us home with Adderall and told us to come back for monthly appointments to check in. The stimulant medication certainly helped with the hyperactivity and focus, but not for the “defiance” or weekly meltdowns she would have for (fill in the blank…..anything from itchy clothing to her milk not being cold enough could send her into a tailspin). We tried our best but after years of walking on eggshells, my husband and I were sometimes shells of our normal selves if she was having a bad week.

After our move from Louisiana, a state with little to no mental health care support beyond basic therapy, we sought out a new doctor to monitor her Adderall. It was this person who first threw out the word “autism”. While familiar with the typical signs of autism, for some reason I just couldn’t see it in my own child. I was not in denial, because I don’t view autism as a “bad thing”, but I guess when you’re just so close to the person, it’s hard to have an objective viewpoint. A nine hour comprehensive psychological evaluation confirmed that doctor’s suspicions. The diagnosis came as a relief to our daughter, because it simply confirmed that there was nothing wrong with her or innately bad about her behavior…she just processes sensory and information and experiences differently than we do. We would now have to relearn how to parent a neurodiverse child.

I got home from that appointment and broke down into a puddle of tear-soaked guilt. How could I have missed it? How could I have succumbed to so many moments of frustration when she couldn’t help it. There were so many times that I took her behavior personally and I allowed it to put a wall up between us as a way for me to protect my emotions. This may sound crazy but I have yet to find a human that can hurt my feelings as much as one of my kids can. Motherhood is sometimes a mindfuck in that way. I know that I need to let this go. I know we were doing the best we could with the very limited knowledge and resources that we had at the time. I want to blame the system, and I know I can and should. It’s very broken and there are so many kids and families suffering because of it.

But dammit….I wish I could turn the clock back and do so many things differently. Be better for her.

Being a student right now with so much to gain yet so much to sacrifice is very hard right now. Stress plays a big factor when trying to find the right lifestyle balance for me. As a grown adult I am a full-time student yet on the other hand am dependent upon myself to pay my tuitions off and other bills that I have to pay outside of school. Due to my tedious schedule, I only work a certain number of hours and believe I don’t get paid much for what these expenses account for. That stress comes to play when I have all these bills mounted up on me when I haven’t even gotten the chance at parenthood or life outside of academics. At the moment I have another new bill coming at me because now I have to pay for health insurance instead of being under my parents, and as you know now, everything is inflated and has been for a while. I shouldn’t have to be subjected to pay 250-350 dollars a month on my own for an insurance provider that I will only use probably once or maybe twice a year. To me that amount is ridiculous, and we still haven’t even talked about deductibles etc. When you look at other big countries, health care is usually free for everyone because it’s something that is a vital and essential part of your individual well-being, so I don’t get why those same rules can’t apply here. Now that I’m writing this, I’m left wondering how people with disabilities carry the burden of these medical expenses considering the fact that those bills are probably higher than what I even have right now. The best course of action that I can take right now when it comes to health insurance is capped off as well. When I mentioned capped off, I refer it towards my company health care plan, but even so requires a set number of hours that you have to complete in order to even be eligible to apply for such benefits, for which I don’t qualify for at the moment. Right now, I’m only left with private providers that charge me a boat load of money just to be considered at having a health plan, to just say I have a health plan. As it comes to looking towards the future, I’m going to have to ride out whatever plan I can get best for at least a year before I can come back and apply for my company benefits after graduation when I pick up more hours, God willing. With all of this going on, I’m not even a parent so I know the burden must feel even bigger as a parent when even more expenses come into play once other people are dependent upon you. To say the least, its nothing short of amazing how not just regular parents deal with expenses surrounding their children but parents who have to navigate these expenses and other factors of life when they may have children or other siblings with disabilities or abnormalities. As for me, I will keep my head up and see where this whole life thing takes me a year from now or whatever, but its certainly straining and stressful ill tell you that much.

I went to a private Catholic school for many years and because of that, many  of the things I learnt there still stick with me today.  Let me tell you about my experience in a Catholic school as a student with a learning disability.  I should preface by saying that I didn’t get a math learning disability diagnosis until I was 20 but my parents and I always knew I couldn’t do math even when I tried my hardest.  I’m not going to name the school because it wasn’t all bad, just mostly.

I’ll never forget the teachers who made me feel stupid and less than.  There was a math and science teacher who was rather intimidating to begin with as she was notably strict with an ever present serious expression on her face.  Mrs. B, we will call her, cared about the students but patience wasn’t quite her forte.  She didn’t understand that I just didn’t understand and she would ask me, what don’t you understand and I would answer, I don’t know…I don’t even know what I don’t know.  What frustration.  One time, she sat next to me trying to explain some concept to me and she looked at me and asked, “Weren’t you taught this last year?”  I felt my face get red, “No?” I said in a small voice that made me sound like a mouse.  She got up and said she was going to ask my teacher from the previous year.  She left the classroom and to this day, I don’t know if she just stood outside of the classroom for ninety seconds or if she actually asked the teacher but she came back and sat beside me and told me my math teacher from the previous year said she did teach us said concept.  Did it really matter though?! I didn’t know how to go about this math problem so why couldn’t she just explain it to me again (not that I would have understood it had it been explained to me a hundred times)?

In the fifth grade, my math teacher, Mrs. L was more understanding and a bit more patient…with me anyway.  She even tutored me a few years after and I think she understood that I struggled with math but I don’t know if she knew the extent.  There was a day when we had a substitute teacher for her class and this lady was notorious for yelling and just being a miserable human.  We were doing long division and I couldn’t remember a step or I couldn’t part of it in my head, I don’t recall, but she just looked at me and said, “You don’t know how to divide, do you?” I didn’t know what to say.  I don’t know why but that memory has always stayed with me and it still stings a bit.  

These are two minute examples but the point I wish to convey is that this institution was not equipped to help students who could not grasp a concept the first or second time around.  I would always look around at my peers to see if they were as lost as I was and they all seemed to get it.  Uh-oh.  I can’t ask for clarification; I wouldn’t even know what to ask, it would be a waste of the teacher’s time, I’ll just quietly sit here.  

My teachers used to get so frustrated when I’d say “I can’t” and I said that all the time but I really meant it.  I didn’t know I had a math learning disability but I was certain there was something about my brain that prohibited me from comprehending it.  I tried telling people I wasn’t being dramatic, I wasn’t trying to get out of doing the work, and I wasn’t just being hard on myself.  I really, truly could not do it.  One time, on a math test, I was so frustrated with not knowing what the heck I was looking at or where to begin, I just wrote IDK for every answer.  The teacher of course made me retake the test and only then did someone start to take me seriously when I said it’s a bigger problem than they would like to believe.  

I am really lucky to have had my parents advocate for me when I was too embarrassed or scared to.  I had a math teacher in high school who recognized and accepted that I had a learning disability.  She would sometimes tell me when I got frustrated with myself, “You just suck at math but you’re so good at other areas like writing and Spanish.”  She was kind and patient with me.  It has taken a very long time for me to learn to advocate for myself and to speak up but I have started doing so very recently.  I still need to learn to be a little more forgiving towards myself.  

These last few weeks of topics have been incredibly hard-hitting, drudging up many of my own experiences and frustrations, as well as igniting my excitement to share what I do know or hear what others have learned. Neurodivergence, disability, chronic illness, depression, bodies and their accepted forms. It has been overwhelming at times.

I often find my brain caught in a loop trying to process the emotions of my own experiences, trying to process the experiences of others, trying to find an answer, a solution to this fucked up world. All I can come back to is There is no winning. It is a phrase that I first iterated as a teenager, and have never been able to let go of. At that time, it was in reference to toxic parental relationships (still is sometimes haha). But I have found it over and over again in so many different aspects of life. Medically, for me there is no winning. If I am right about what is going on with me, my body is broken, sick, abnormal. If I am wrong, it is all in my head and everyone was right, I am just anxious or need to eat better or need to just toughen up and push through and “learn discipline”. When it comes to the world and its flaws, there is no winning. I can’t fix the socializing factors that create the horror that is racism, misogyny, white supremacy, genocide, ableism. I can do my part to not contribute, I can do my best to combat the systems in place that create those, but there isn’t enough time in my life nor energy in me to truly fix it, change it permanently. It can’t be done in one lifetime. And it breaks my heart over and over again. We’ve discussed recently how even in a small scale, adjusting to accomodate and correct for one person or experience can have a negative impact on another. We can’t create a space where every individual person is able to be comfortable and free and happy at a basic level–depending only on physical and emotional needs, spaces with lighting levels and seating and maneuverable space and learning formats or communication formats suitable to every person, where stims of any kind are acceptable. The alternative is creating separate spaces for different needs and desires, but to me that borders on segregation and isolation once again. We move all the people who can’t function in the “common” way into a new space but isn’t that the same as just telling them not to come at all. And that is before thinking about the resources that would require, the infrastructure, the training, the social relearning and culture shift that would have to occur. And how do we globalize that? Is it even possible? There is no winning. We can’t force entire cultures and countries to alter their traditions and ways of life, and so many of those are firmly and strongly holding to the truth and righteousness of their beliefs and thus the wrongness of any others and how if it is wrong it cannot be tolerated.

I suppose that I would at least like to start. I want to create one place in this world where some semblance of balance and peace and compassion can exist, where the voices of the wronged are heard and reconciled, where people are respected without a question or hesitation. I want to live in a world, or at least a country, where the focus isn’t on how much we can squeeze from someone, how much we can get away with doing the bare minimum for those around us so as to avoid punishment and consequences, but rather focused on how we can serve and support the people around us. A communal world, not a individualistic world, where differences in mind body and soul are valued and honored and treated as opportunities to learn and grow rather than as challenges to overcome.

I am so sick of existential crises. I am so sick of being sick. I am so tired. I just want joy to thrive. There may be no winning, but it doesn’t mean I can’t keep fighting to create that world.

Why do we define such a thing as “normal” behavior? No one is normal, everyone is unique, everyone has their own strengths and weaknesses, quirks and faults, likes and dislikes, and so no one is really “normal”, everyone is “abnormal”. So why do we define some people as more abnormal than others? Where do we draw that line between what is the norm and not? What about this person has offended you so much that you need to stick a label on them and say they should act more normal?

I think it should be a goal of society to get to a point where we just are accepting of peoples individual needs without judgement and without setting certain people apart from others. For instance, I would not question someone wearing headphones on their way to class any more than I would someone who was stimming while on their way. Everyone has their own needs, no matter a diagnosis. If someone in our class needed the windows to be unshaded, or the noise level to be low, we would happily conform to allow that. However in some circumstances, such as a business setting or a less relaxed class, people may be less inclined to provide these accommodations.

This is not to say that I do not support the diagnosing of mental illness or neurodivergency, I am simply saying that we shouldn’t treat diagnosed people any differently than people without diagnosis. Everyone has needs and it is up to us whether we accommodate for those needs and to what degree. As a society we can decide to accommodate the best we can, and just as importantly we can not isolate people with greater needs than others and not oust them from society.

As we discuss the lived experiences of disabled people, it is so important we uncover the systemic methods of rendering them invisible to media and government focus. A facet of Israel’s occupation on Palestinian land that does not get nearly enough attention is how it has failed disabled people for years and has only been discussed by humanitarian aid organizations in the last 4 years. These acts of suppression and terror toward the community has only gotten worse from their already bleak reality with the ongoing siege and blockade on Gaza. When we campaign for the rights of disabled people across the world it is so important, now more than ever, to understand the intersectionality of marginalization inflicted by the oppressive systems in place to bar them from the kind of world we envision.

Israel’s unlawful closure of Gaza for 16 years has led to a general deflection of resources to support individuals with disabilities in day-to-day functions, including prohibitions on importing hearing aids and batteries, wheelchairs, functional prostheses, crutches, and more. People with visual, hearing, developmental, or intellectual disabilities are especially in danger from the indiscriminate attacks on Gaza because they may not hear, know about, understand, or be able to react to what is happening. If advance warnings are provided to civilians at all they come 3 to 5 minutes before they are in danger of having their location bombed. It gets even more difficult for individuals who require greater support from infrastructure crafted around their disabilities to evacuate.

” Zahra Al Madhoun, a 39-year-old woman with a physical disability, initially decided to stay behind when her family fled. “They didn’t give us a safe place to go to,” Al Madhoun said. However, she fled a few days later after she said she received a call from someone purporting to be Israeli intelligence warning her to go south. “My home was my safe place. I only left because of the call. I was afraid I would be the only one to stay behind.” Al Madhoun is currently living in a displaced persons’ camp in dire conditions and said she was considering returning home. ” (Human Rights Watch, November 1st 2023)

Moreover, disabled people experience high levels of psychological distress owing to the helplessness they feel about potentially having to evacuate areas that Israel may eventually target as they eradicate Palestinians from their own land.

” Samih Al Masri, a 50-year-old man who said he lost both legs in an Israeli drone strike in 2008, said he was sheltering at al-Quds hospital in Gaza City, but does not feel safe anywhere: “If they bomb the hospital, I will be dead. I know I cannot move. ” (Human Rights Watch, November 1st 2023)

It is essential that we continue campaigning for the rights of disabled people across the world as we revolt against the systems of oppression in place, especially in occupied areas, and put them in the spotlight of our discussions because their reality consistently goes underrepresented in conversations and calls to action across the board. The ceasefire we are demanding from Israel is to spare all of Palestine and its residents of the genocide and crime against humanity it is actively committing.

I urge you all to keep reading, keep advocating, keep crying, keep fighting, and keep putting pressure on our representatives and government to call for a ceasefire and free Palestine.

Article referenced: https://www.hrw.org/news/2023/11/01/gaza-israeli-attacks-blockade-devastating-people-disabilities