Disabilities, Diagnoses and the Twists in biomedical Healthcare Systems

I attended a workshop on disability rights sometime around 2016. I think it was prompted in part by the release of the Right of Persons with Disabilities Act 2016. Shampa Sengupta facilitated it, and today, I'm glad I connected with her.

During the introductions, I talked about the different intersections of my identity. Since I didn't consider myself disabled, I hadn't introduced myself as a disabled person. The experienced facilitator that Shampa di is picked up on it and discussed the significance of our intersectional identity.?

By the end of day 1, I learned how non-binary the spectrum of abilities and disabilities is. That I have access to a pair of specs means I don't feel disabled when it comes to being able to see things at a distance. Without specs, everything in the world would look like a Quantum cloud. But, that was only the beginning of exploring my disabilities. I had to change how I introduced myself several times since then.

?The RPWD Act 2016 defined mental illnesses under the schedule of specific disabilities, and I have been diagnosed with Major Depressive Disorder for most of my life since I was 13 years old.?No reasonable accommodation was ever made for me anywhere. There were personal considerations and empathy from some colleagues, but there was never any systemic support made available, even after the Act was passed. Given that I have mainly worked with people aware of these terms, concepts, and rationales, I think it says quite a lot about how far we have to travel for our systems to be disability-inclusive. Reasonable accommodation is a great thing to advocate for on behalf of someone else, or to prescribe a different system to be inclusive. But when it comes to your neurodivergent colleagues, it's challenging to resist expecting them to behave neurotypically.

But the depression wasn't a result of adverse life experiences. In fact, for the longest time I didn't realise how much the dysfunctions in the medical healthcare systems were responsible for creating quite a lot of the adverse life experiences I have had. It has taken me a good chunk of the last two decades to slowly piece together the puzzle of my mental health, and in involved extensively reading research papers around my diagnoses, and medications.

I had epilepsy since my birth, and medication back then for treating the kind of epilepsy I had suppressed cognitive abilities and intellectual functioning to a large degree. This was well known amongst the doctors who treated me. So much so that the doctors had advised my parents not to have much hope for my academic performance or much else, not that being unmedicated was any better - I'd have suffered frequent epileptic attacks. Eventually, my nervous system would have been further damaged. Side note: since epileptic attacks can occur anytime, and during attacks patients often grind their teeth, no dentist would ever prescribe you tooth aligners because during an attack that can lead to extensive tooth and gum damage.?

The diagnosis of epilepsy has had severe implications on my life -

• First, I couldn't pursue contact sports (and I was hugely interested in martial arts) or swimming.
• Second, teachers in every school had to be informed because the epileptic attack could occur anywhere. But none of them really knew what it meant. Mostly, no one held much hope for me. If I failed in some subjects, it was expected. If I succeeded in something, it was seen as a fluke not to set up unrealistic expectations. Some teachers liked me due to my extremely introverted nature. I guess that they mistook me being non-verbal, pretty much constantly being in sensory overload, and having low interest in social interactions (all traits of the autism spectrum) as introversion.
• Third, some classmates tried bullying me, but they couldn't quite figure out whether their bullying was impacting me or not so they eventually stopped. I was being affected, and that was why I was socially withdrawn. Most classmates were scared to play with me - what if I got an epileptic attack when playing and they were accused of doing something to me? My diagnosis had leaked from the teachers to the students.

Here's something else that I have realized more recently, and I think the doctors who were treating my epilepsy missed out on big time. I'm on the autism spectrum, and life has taught me to mask extremely well. I realised this when I started looking into and educating myself about the neurodivergence paradigm. But, it should have been apparent to the doctors even by the biomedical model.?

You see, my mother was admitted to the government hospital for the C-section for my birth - she worked at this hospital, hence, there was a certain safety and familiarity with the staff an the environment. The surgeon assigned to my mother was away performing another surgery in a private nursing home. The surgery took longer than anticipated, and by the time he was back at the hospital for my mother's surgery, it had been almost 8 hours since the placenta had detached. To put it simply, the fetus that I was, ready to be born and still in the womb, wasn't breathing for 8 hours. Post-delivery, it took quite a bit of effort by the doctor and nurses to ascertain whether it was a stillbirth, and finally, I took my first breath and cried. It was at the age of 3, when I had my first epileptic attack, that I was diagnosed with epilepsy. I was on Carbamazepine for 15 years, ages 3 to 18. There's strong documentation about how Carbamazepine alters the brain's serotonergic and dopaminergic systems, a.k.a hello depression and executive dysfunction!

However, none of the doctors referred me to get evaluated for autism, ADHD, or any other intellectual disabilities that were comorbidities. In fact, they ensured I was not assessed by telling my parents not to hold much hope for my development, growth and achievements. I would like to know what they were thinking, and if they were thinking in the patient's best interest, i.e., a 3 year old child who had survived being born. Even the most early studies on autism pointed to difficult birth as one of the causative factors of autism, and here, there was so much concrete documentation of the impact my delayed birth had on my nervous system and my brain. If they had referred me for evaluations and guidance, my parents would have been able to support me much better in realising my potential.

If I ever meet these doctors, I'd like to send them a compilation of my poetry, writings, publications, how my work has impacted people and systems, and a strong critique of the ethics of their medical practice. These are evidence of the sheer human potential they had advised my parents to give up hope for.

Happy Pride Month, y’all.