Disability Midterm Study Notes 2023

Disability Midterm Study Notes 2023 CHAPTER 1 LESSON 1 “When a flower doesn't bloom, you fix the environment in which is grows in, not the flower” Alexander Den Heijer What is the class about? - Social cultural and moral construction of some differences as problematic and stigmatized - Exploring how that imagining over time via power - Dominant response; fix or enjoy? - Most of us want to fix deviations compelled and urgently - Model instead the playfulness and wonder of it Where did DS originate? - From the work of self advocates and people with lived experience - Emerged as an alternative imagining as a solely medical view/ deficit What are the core ideas? - Paradigm shift, from medical and individual model to social model - Shift from people fixing to environment changing - Broad in scope; physical, intellectual, learning disability, plus mental health and chronic illnesses - Dynamic, controversial, open, unsettled Disability studies growth internationally? - Uk and USA major drivers - Grown from 0 courses in 1980 to 500 today in english nations - 5 BAs in DS (Canada) grad/law - PHDs; pluridisciplinary - DS grew exponentially from 2012 to 2023 Why is DS growing? - It meets the growing expansion of needs for certain groups Boomers: aging and acquiring impairments Vets: returning from war alive but impaired, a national issue LD and mental health: rapid increase in diagnoses - DS needed ideas for governments and employers as laws being created but without a clear sense of how to implement Links with meta trends? - Dovetails with other patterns in society such as EDID, promotes greater inclusivity

- Builds on other civil rights movements such as BLM, LGBTQ plus rights, indigenous rights etc - Population health approach; what is good for some might not be good for many Common career pathways from DS studies/ - Education - Healthcare - Marketing and business - Government and law - Social services CHAPTER 2 WEEK 2 Labels, Language and Disability Difference between impairment and disability? Impairment: Loss or abnormality of physical bodily structure or function Disability: Disadvantage, limitation or function loss caused by…Internal OR External factors W.H.O and Disability? Originally there were only two pieces of legislation International Classification of Impairments, Disabilities and Handicaps (ICIDH) International classification of diseases (ICD) Impairment – loss or abnormality of physical bodily structure or function Disability – limitation or function loss deriving from impairment that prevents performance Handicap – the disadvantage condition deriving from impairment or disability - A 9 year process involving hundreds of countries - Ratified on may 22, 2001 at the world health assembly W.H.O.’s Dramatic Shift? Disabilities affect everyone, not just those with said disabilities WHO’s dramatic shift focuses on the level of function over medical diagnosis/prognosis Escapes the previous disease focus to consider the person in his or her shoes - Physical barriers, socioeconomic conditions, race, gender, etc - Elevated mental illness to the same level as physical disability The USA has better accommodations for reducing barriers, plus adding penalties when the accommodations are blocked (ie. using smth meant for a disabled person making it inaccessible for them) Canada keeps the power in the hands of professionals and medical experts when it comes to deciding whether or not you have an impairment, creating boundaries and issues CRITICISM: Non legislative power, reinforces medical authority, a linguistic shift (impairment to function) not a paradigm shift A Question of Language?

Social: environmental, rights outcome The two approaches to the Individual model? 1. Medical model; prevent and cure 2. Therapeutic model; therapy and adaptive devices The idea is that “internal” factors disabled people, so the burden is on the individual to change Person fixing perspective lens: - Confined to a wheelchair - Can't climb stairs - Is sick and Needs help - Bad attitude - Needs a cure - Is housebound - Can't use hands - Cant walk - Cant talk - Cant see or hear - Needs a doctor - Needs institutional care What does the PF perspective think we should do..? - Social workers - Doctors - GPs - Speech therapists - Special transport - Educational psychologists - Surgeons - Child development team - Special schools - Training centers - Sheltered workshops - Benefits agency - Occupational benefits Disabled people as passive receivers of services aimed at cure or management Examples of what is stated above? Blindness & Education: IM: Being blind is an individual matter, any resulting issues are your burden to resolve, best way is to ‘fix’ your eyes, barring that, you need to pay to learn braille, or for large text docs, or reading software; teacher shouldn’t have to do anything;

SM: All Canadians have a right to education and society should bear the cost/burden to ensure you can access that right by providing education in accessible formats, and educating teachers to know how. Comparisons between the IM and the SM Internal problems - Insane - Disorder - Defect - Sick - Deficient - Abnormal - Diagnosis - Mistake - Broken External factors - Communication - Technological - organizational/systematic - physical/architectural - Attitudinal - Disabling environment - Human rights violations But wait! If society is designed to suit only some people, doesn't that mean those barriers and the resulting disadvantage is socially-constructed? And thus society’s responsibility to remedy? SOCIAL PATHOLOGY: Environmental and rights outcome? Environmental: architecture (how is the area built/structured, accessible paths etc) Rights outcome: laws/rights, policy External factors “disable” individuals, therefore the burden is on society What do you do from a SF/SM POV? The social model/society fixing point of view suggest entirely different focus for where the problem lies, and what you will want to fix It argues that you turn the lens outwards to the environment, social economic, policies, built world, and examine the ways in which barriers are inherent to them - built into them because they assume a typical development or normate a body/mind in their design (echo of BLM arguments, impact of segregation and related laws) What do we imagine we should do via the SM? - Mobility access - Health

2. Root beliefs are usually naturalized over not consciously chosen/considered or what seems natural/obvious, this is hegemony in action 3. That lens leads to particular outcomes, which may seem unavoidable but are actually a product of the lens “choice” 4. The outcomes reinforce the original beliefs Medicine therapy treatment is useful but…? - “The problem comes when doctors determine not only the form of treatment, but the form of life” - The undue emphasis on clinical diagnosis vs experience or preference leads to a partial understanding that narrows the scope of life, especially when a large variety of disabilities and illnesses do not respond to cure (ex. End of illness) What is the problem with individual pathology? Time on meds/cure is time NOT spent on: - Political, practical & rights changes to enviro / society - Self-acceptance & acceptance by others as is - Learning to live with dignity now - A “gift” or capacity focus Obfuscates state/government responsibility - Reduced pressure for accessibility laws, enhanced citizenship - It’s their problem, not “ours” - Demands arbitration of who is and isn’t “disabled” - Emphasizes income support as opposed to employment training What is the problem with the social model? - It has not gone far enough - It is hostile of medicine and devalues it - Just because barriers are removed, does not mean discrimination will stop - It generally disregards the body (result; social theory of impairment) - It generally ignores intersectional oppression (often western centric, does not consider intersections with race/age/gender/sexuality etc) - It does not address all impairment categories equally RECAP Person Fixing Perspective [synonyms] individual, medical, professional Person fixing perspective focuses on: - Impairment/biological difference - Impairment as deficit, loss, gap - Impairment as the problem to be fixed via: 1. Prevention 2. Treatment

3. Cure In brief: The impairment is the problem, so the person must be fixed Who has the expertise to make positive change? Expertise & control of decisions is dominated by 'professionals' (doctors, therapists, teachers, etc) through legalistic and paternalistic frameworks. Perspective is driven by the? Medical Model of Disability. Under the medical model, internal differences/deficits (impairments) are the pathology (or major cause) of disability. For this reason, disabled people need care/charity and should be helped by one-off good works by individual teachers, managers, etc. Common models of Disability Studies that fall under this perspective? ❖ Medical model / Biomedical model ❖ Prevent or Cure Functional Approach: therapy, adaptive devices, etc - Individual model - Charity Model & Tragedy model Society Fixing Perspective [synonyms] social, environment, rights, law Society fixing perspective focuses on: - Disability does not come just from impairments - Disablement is a process - Socially constructed meanings of disability exacerbate impairment - Considering an individual's gifts/capacity or value of diversity In brief: inaccessibility/attitudes are the problem, so society must change Who has the expertise to make positive change? Recognizes disabled peoples' experience as valuable expertise in-and-of itself, prioritizing more voice, agency & inclusion in the decision-making process. Perspective is driven by? Under the social model , external barriers are the pathology (or major cause) of disability. Disablement, then, is the experience of social oppression -- rather than cure or treatment, disabled people need changes in rights, policies and laws for stable, permanent change and not just one-off good works Common models of disability studies that fall under this perspective? - Social model ★ Environmental change (architecture) ★ Rights outcome focus (laws, rights, policies, attitudes) - Political relational model

- 20-40 db = mild loss - 40-70 db = moderate loss - 70-95db = severe loss - +95db = profound loss What are the THREE approaches to deafness? 1. Deaf as an individual issue/pathology IM - Medical definition: a loss of functional hearing and reliance on visual communication CAD-ASC) - Focus: deafness as impairment to “fix, cure, prevent” - Self-advocates reject this as main or only approach (no voice or choice for them; disabling effect) 2. Deafness as a societal phenomenon SM - Being Deaf is to be a Linguistic community (minority group) - Focus of Society: Deafness as disability to “accommodate” and “include” through adaptations - Self-advocates feel this is acceptable but limited – often still leaves them marginalized (Sparrow) 3. Deafness as a cultural group - Focus of society: Name, Include & celebrate the gifts & distinct contributions of the - Deaf Deaf people can inherit the past & be a community – we are not just be ‘unfinished - hearing people’ (Padden & Humphries) What were Solomon’s THREE approaches to deafness? 1. Cure prevent; deafness as Individual pathology 2. Accommodation: deafness as disability 3. Celebration: deafness as a culture Important Historical Moments? 364 BC: Aristotle famously states people born deaf are “senseless” and “incapable of reason”, Deaf people remain objects of ridicule for centuries to follow 1500s: Dr Geronimo Cardano identifies deaf people who can reason (you don’t say…) 1500s: Pedro Ponce de Leon develops sign language, later recorded by Juan Pablo Bonet 1668: Holder & Wallis teach deaf man to speak 1760: First free school for the deaf opens in France using the new French Sign Language 1817: First American School for the Deaf formed at Martha’s Vineyard followed by Gallaudet University (1857) 1880: The World Congress of the Educators of the Deaf meet in Milan, Italy (Oralism vs Manualism debate) 1880: National Association of the Deaf (US) 1924: First Deaflympics held in France 1960s: Telephone TDD invented for deaf

1961: First cochlear implant invented 1972: First Miss Deaf america pageant 1972: closed captioning for american television 1973: Rehabilitation Act in US & opening of Robarts School for the Deaf in London, ON 1977: First CI implanted in a human 1985: CIs approved for people 18+ 1988 : Deaf president at Gallaudet university 2012: Supreme Court of Canada finds deaf/mute people may be witnesses in trial 2012: Netflix guarantees CC by 2014 as result of ADA lawsuit The THREE key markers of deaf history? 1. Language acquisition #fail - Neural development - Unintentional disablement 2. Sign Language emerges - Monks and education - d/Deaf groups and communities 3. Oralism vs manualism - State controls how d/Deaf learn - A.G. Bell > eugenics & schools to make the “perfect citizen” NUMBER ONE Language Acquisition? 1. 18-36 months is critical time for child brain development - Learning capacity diminishes between 3 -12 years old - Deaf children acquire sign as hearing children acquire spoken language 2. Raises questions about; - State support early to access sign - CI implantation early vs later in life - Effects of assimilation into hearing culture (lose culture, atrophy of the signing part of the brain) Striking Stats! - 90% of deaf parents have hearing children - 90% of deaf children have hearing parents - 88% of parents don't learn sign in FLA - Implications; 80% of deaf kids don't learn sign in FLA Implications: What’s at stake? (SM/EF) Societal issue/ pathology: o inadequate provision or state funding of ASL o Burden on Deaf & families to pay for lessons o Outcome: the (hearing) parents don’t learn sign o 80% of children do not learn sign language during their critical language development period

1. Bell started a movement to ban ASL - Called it manualism (negative implication) - Oralism: lip reading, speaking and reading in english 2. Milan conference - Resolution: end ASL in deaf education 3. ASL teachers fired en masse - By WWI 80% of all deaf kids had no ASL instruction 4. Rise of Eugenics - Sterilization and marriage bans to prevent deaf reproduction Choices for disabled people being made by non disabled people Individual model view and assumptions - That ‘not hearing’ is a problem instead of simply part of human variation (pathologization of difference) - That deaf people must fix / adapt to ‘hearing norms’ (individual burden of change) either through: prevention (eugenics/breeding), cure (implants) or treatment (education in lipreading/speaking) Societal model view and assumptions - A minority/diversity - Not a tragedy - Rooted in rich culture - Positive thing not negative thing - How to resolve the issue - society /parents learning ASL - deaf/deaf distinction = disability/impairment What is Martha’s Vineyard? - Vacation island off the coast of Cape - Cod, MAApprox 16,500 residents - Third-largest island on the eastern seaboard - One of the earliest deaf communities in the US - Hereditary deafness among island dwellers has resulted in high percentage of deaf people - Approx. 37x the national average - The response? Creation and adoption of the “Martha’s Vineyard Sign Language” (MVSL) Replaced by ASL in the 80s Models that get messy? British Social Model advocates: UPIAS claims disability is not caused by physical impairments but by socially constructed barriers Medical Model counterpoint: If the Deaf aren’t disabled, why do they need disability rights, interpreters, and translation costing society $$$ per year? Deaf culture today? Environment and disability

Deaf people have a vibrant culture, it has many diverse and innovative components, such as - Expansion of ASL - Regional variations aka slang - Deaf humor - bodily/facially emotive - Vibrafusion lab (listen to music movies etc through vibration patches) - Woojer vests/straps (gaming technology, vibrations throughout chest) - Deaf cultural center - Signs restaurant and bar (toronto) Bridging culture(s): SENCITY Night clubs? It is a multi sensory experience dance club created by and for the deaf community. - Growing popularity with the hearing community Includes a flipping of the power dynamic - A majority-minority benefit paradigm is inverted Includes.. - Signed songs - Snacks in sync with music - An aroma jockey - lit/color themed dance floor Sencity and the societal model? - Sencity is “reverse inclusion” - Disabled community creates a setting/event that is exceptional - TABs want to join in with them … (temporarily able-bodied) - Sencity reflects Societal model tenets: Disabled people have voice & choice up front - DP included in design process 100% - Environment-changing (not person-fixing) - See disability as difference not pathology & as opportunity/gift, not disadvantage/weakness - Impairment not master status/ universalized or generalized Cochlear Implants - The Blabble fish conundrum What are they? - Surgically implanted electronic ear device to wear - Imbedded within the ear - External processor mounted to the back of the skull What do they do? - Improves hearing sensation electrically - Does not restore normal hearing What does CI look like in practice? - Pathologizing and medicalizing deafness - Surgery as solution, follows the IM and MM

The Babel fish analogy!!! - Not without limits… Babel Fish (BF) resolves all communication barriers, CIs only resolve some - Focus is biological deficiency/normalcy not on ‘expanding opportunity’. CIs may be as much about children adopting their parents “hearing” culture Is Deaf culture a real threat to oral culture? - The Babel fish is a small, bright yellow fish, which can be placed in someone's ear in order for them to be able to hear any language translated into their first language. Bioethics of the Cochlear implant? - Individual rights vs cultural survival - Do CIs create culture confusion? - Does imperfect CI technology leave people, specifically children, between cultures with no sense of belonging? - Negative educational outcomes of this isolation? Cultural VS. Individual Can we consider both the interests of a culture and the ‘best interests’ of a child fairly? - Early implantation is medically more effective - But earlier implantation - NO ASL - Cultural loss Assessing ‘best interests’ for children? - Is it ethical to implant a child who can’t grasp implications? - How do we balance a child’s agency and cultural protection? WEEK 6 CHAPTER 6 ADHD Kemesha Camp, main takeaways: - Invisible disability - Academic advisor who sent her to psychologist on main campus - Dyslexia diagnosis - Didn't think she was disabled until finding out about it - Can use disability to your advantage - Disb makes u have different behavior and work ethic - Disability shouldnt hold u back Two key questions to reflect on for this chapter: 1. Does ADHD even exist as a medical/ neuro-behavioral disorder? Or are we individualizing/ pathologizing / medicating kids for the “malady” of being kids? 2. If ADHD is ‘a thing’, then… How best treat/cure/prevent/manage? Who must change? IM/SM suggestions?

Who has the voice, power, agency here ? Diversity within the label? ADHD is one label with diverse manifestations (symptoms and severity) in real people. The resources and tools each student/ family/ school has access to, or can afford varies and their responses to each tool or medication also varies. ADHD - No blood tests or mri scans to diagnose with adhd - “Too successful” to be disabled Is ADHD an advantage? - Adhd is highly linked to genetics - Those with adhd have lower levels of dopamine receptors - Less sensitive to reward becoming understimulated - Thinner prefrontal cortex in adhd patients - Ritalin is often prescribed - Dramatic increase of diagnosis in adhd 5% increase per year - 35 percent increase in adhd prescriptions - Those with adhd tend to be more creative “As the ADHD one” Feeling: - Misunderstood - Subordinate - Ashamed - Afraid to fail - Desired to be loved and accepted for who we are Take note that ADHD was not on the brain for the person diagnosed with it 35 Things people with ADHD wish others knew about their experience: https://www.buzzfeed.com/carolinekee/adhd-is-a-disorder-not-a-choice? utm_term=.la4RAvroOv#.kxgjkawqEa - DS asks us to listen to labeled people’s voices and life experiences too – not only “professionals” = multiple expertises - Their stories help reduce pathologization, & negative stereotypes - Highlights the negative effect of environmental, structural, and attitudinal barriers *** & offers ideas on what to do ADHD Basics It is not a new disorder. - first named in 1902 by Sir George Fredrick Still (articles in 1770) - [1968: first DSM mention; 2013: official DSM] It begins in childhood. Neurological Disorder.

Despite that…many labeled kids are medicated: - USA: 2/3 and Canada: ½ Treating a disorder… Why not just take drugs? Many people with adhd take prescribed drugs and find that it helps with their symptoms - same principle as glasses it helps but does not cure Key takeaway: Why does the DS model want to mess with that? What's the harm with legit pharma? Answers : - Serious meds have side effects or issues - Victim blaming and the burden of change - Misses opportunity for class/work - Meds individualize the issue within the person rather than looking at what is going on within an environment - Meds only solution…missing opportunity to learn from those people - Canary in a coal mine - steep rise in rates of young people saying they are experiencing symptoms, is that an opportunity to change the environment so everyone can focus better - Meds are NOT for everyone Meds and Factors impacting misdiagnosis? Diagnostic comorbidity - Comorbidity is a medical term that you may have heard your doctor use. It describes the existence of more than one disease or condition within your body at the same time Diagnostic inaccuracy - No needle/blood tests - Lack common standards - Sleep deprivation has similar symptoms - Cognitive bias of testers (ex sex, girls manifest differently > what's normal??) Barriers to alternative supports/care AGE - Many diagnosed by first grade - Diagnosed before brain and behavior is finished developing What are some disorders that are comorbid with ADHD? 1. Anxiety 2. ADD 3. Gifted 4. Tourrettes 5. ODD 6. OCD 7. Autistic spectrum disorder 8. Specific learning difficulties

9. Sensory integration disorder 10. Depression 11. Auditory processing 12. Developmental coordination disorder Meds part 2, Comorbidity, complexity and diagnosis… Getting an ADHD diagnosis is tricky and contested - Ex. WHO definition vs the definition in the DSM - Diagnoses vary by country - Standardized testing research being done, varied by county and state Understand that adhd can manifest in different ways based on race, gender, ethnicity, etc October to december babies most likely to be diagnosed with ADHD as they are youngest, have less time for brain development so doctors turn it to adhd diagnosis Pressure on schools for standardized tests and funding - Teacher’s role big although they’re (extremely rarely) trained in mental illness - In some counties schools get better funding based on test scores is standardized testing - Incentive for school where you do not have to use the kids with labels in standardized tests scores - Trying to get more kids labeled so they can be dismayed from the overall marking and the county test score will go up, in turn giving schools more funding Comorbidity: Up to 75% of ADHD folks have comorbid conditions that complicate diagnosis & treatment ADHD Kids can also experience: - 30-50% oppositional defiant disorder (ODD) - 30-50% conduct disorder (CD) - 20-30% anxiety / depression - 11-22% bipolar disorder + various learning disabilities / literacy What are some of the main concerns with prescribing drugs? - Legitimate concerns such as overdose side effects and addiction - Misinformation concerns - Ideally combated with other efforts such as - Behavioral therapy *prior to new drugs - Class/school accommodations - special education services Potential side effects of ADHD medication - Weight change ie gain or loss - Tics or anxiety - Suicidal thoughts and behavior - Disruption in social behavior - Addiction to medication - Drug abuse/misuse