Best Memories

I remember after we started using her crib. We bought a soother for it. It was in the Playskool aquatic theme and it had some kind of weird liquid with fish in it and when you punched the main button the music or atmosphere sounds would play and teh motor would gently whir and the fish would bob around in it and soft lights would blink back and forth.

I learned quickly that the soother actually worked for her sometimes. She’d wake up crying and I’d rub her tummy then put the soother on. She calm down and watch it and drift back to sleep. It didn’t take long before she learned to punch the big button herself.

One night I remember I woke up, hearing her making wimpering noises. I was so dog-tired I lay for a moment thinking about how I needed to get up and soothe her… maybe nurse her too. Then I heard her punch the button and the soother came on. She quieted down right away. I rolled over and looked at her. She was lying there, motionless, watching her soother. So I didn’t get up. When the soother was done, she punched it again. Then again. Then again. She punched her soother each time it finished at least six times. I was so blown away with how determined she was to stay soothed and quiet. I felt like she was challenging herself to remain calm. Eventually, I got up and fetched her. I wanted her to know that the staying calm was worth it, that mommy comes eventually if you are still needing her. I felt like it was her reward. SHe was happy to see me but she was still calm and serene. It was almost eerie how that night happened. But it was one of the sweetest nights we ever spent together. Its the night I want to remember forever.

short essay on disability perceptions

(I had to cut this down from 1200 words to 900 words. I get wordy)

The American attitude towards people with disabilities has changed drastically in the last thirty years. This change has been exponential, however, considering that the attitudes prior to the 1970s had hardly changed.


Society has progressed beyond the belief of the “moral failing” model, to some extent, but not greatly. The most recent trend of reactionary “back to the land” (AKA “the crunchys”) attitudes among social liberals has not shown much difference from the moral model when it comes to people with disabilities. Reactionary liberals believe environmental factors are the primary cause of all negative ills and often stress the idea of reversing or correcting those environmental factors. In the online world of skepticism, this is referred to as “woo”  Woo promoters are the people who insist that Autism comes from environmental “toxins” like vaccines, red dye #6, gluten and/or casein and a whole host of other evils. The Woo model is built upon a rejection of modern advances.


But what of the real medical model? Do Woo promoters have a point when they accuse modern medicine of being callous and harmful in its attitude towards people with disabilities?


I don’t think so. The medical model came our cultural ignorance; doctors were learned people with vast knowledge compared to the average person. Up until the 1940s, education was not a common thing. Literacy was low and school enrollment was barely 50% of all children. By 1970s, enrollment had jumped to over 75% with consequent higher education changes and literacy rate changes. This is an astounding jump in education and knowledge within a short time. Education can change overnight, but cultural beliefs are not so fast. Before the 1940s, a person’s worth was based upon their production, and this included children. It is little wonder that an uneducated populace would see people with disabilities as a shameful hindrance or a strange mystery. Science had answers and those answers sometimes gave solutions. It was natural that culture would follow this model.


In the movie “Willowbrook”, we see a moral dilemma as well as an ethical one. What is not so visible, but it is there nonetheless, is the greater cultural dilemma. Housing children with disabilities is not cheap, has never been cheap, and at the time, little hope existed for most families with a disabled member. There was little information and there was no understanding. Medical models proposed that rather than a disability being the negative consequence of some decision of the parents or the child even, there might be a biological factor that left no blame. Offering a way for parents to relieve themselves of the burden of a family member they could neither care for nor understand was seen as a great advancement of society.


Without a method of communication, a child like Brian had no chance of ever being anything other than a warm body in a chair for someone else to care for. The medical model tells his mother that no matter what, Brian shows no brain activity, no understanding, no recognition of anything. What a small leap in logic to conclude that Brian does not recognize her as his mother! How easy to believe he will not know what she’s done not be hurt by being left, and not even miss her. How could a mother in those times believe anything else with so little information? The medical model provided answers, experts and a lessening of guilt. It also gave the illusion of competent care.


Today we have the social model. Ironically, the social model follows the medical model naturally as the result of progress in medicine. Our ability to understand the brain, the body and the human within both has advanced to a point where we can no longer accept the notion that a person with a disability, no matter how severe, has nothing inside, nothing to offer us. It is precisely because the medical model prevailed over the moral model that we have learned as much as we know now and continue to look for more answers.


However, the greatest advance has come from marrying the medical model to the social model. Accepting medicine’s advancements as well as acknowledging its failures is what has lead us to the point of understanding how disability can affect a person and how it cannot. The social model alone creates problematic movements like Woo. This is people rejecting science and medical understanding altogether. This is not optimal care. People with disabilities are people first but that does not mean their disabilities can be ignored. The medical model was not callous,  society was callous; rejecting people with disabilities as “unworthy” of inclusion. We can, as a society, place value on all people regardless of ability because we now know so much more about what “ability” means. Value comes not just from productivity in our material world but from the connections we make between each other. Thus is the social model fully realized: embracing the medical perspective to make proper accommodations while accepting the social perspective of valuing all people.


A child like Brian received medical care and not much else under the medical model. In some ways, this would have been good, as his family, not being fully informed of his needs, may not have been able to do so. But Brian, like all people, needs and deserves more than surviving. That Brian was allowed to be the subject of medical trials in exchange for a higher level of care is an example of how society could not see the intrinsic value of the person inside his palsy. Clearly, the social model had to come about but not without the medical model to guide it.

coming soon!

I will be doing an extensive write-up about my trip to Norway. It is epic. Or possibly many parts. Haven’t decided just yet. Need to finish at least some of it first. SOON!

Everyone has one or two, I still get them…

When I was a child, someone was showing me how to play chess. I thought they said the knight moves in an “owl” shape. I didn’t quite understand why it was called that but figured it was some chess term (you know, like “love” in tennis and “fore” in golf)

I believed it was called an “owl” shape until I was in my early 40s when one day I suddenly realized it was “L”