FACULTY OF HEALTH SCIENCES

Understanding Disability

Professor Roger Stancliffe

OVERVIEW

TOPICS UNDERSTANDING DISABILITY Eugenics and forced sterilisation Approaches to understanding

disability

DISABILITY & MEDICAL PRACTICE Down syndrome & life expectancy Developmental disability medicine Language and disability Vaccination and autism

My primary focus will be on developmental disabilities, particularly intellectual disability (using Down syndrome as an example)

Eugenics

Eugenics was formulated and named by Sir Francis Galton in 1883.

Eugenics was intended to improve the genetic composition of humanity through reducing the fertility of those seen to have defective genes by: - Preventing in-breeding - Eliminating hereditary diseases - Anti-miscegenation (preventing breeding between races) - Forced sterilisation

Eugenics was implemented in the early 20th century through laws and social policies, including forced sterilisation of the feeble minded

US Supreme Court: Buck vs Bell (1927)

Carrie Buck (aged 18), a resident of the State Colony for Epileptics and Feeble Minded in Virginia was compulsorily sterilised after a Virginia eugenics sterilisation statute (not repealed till 1974) was upheld by the US Supreme Court (8-1) in 1927.

Subsequently many US states updated

their sterilisation statutes to reflect the Virginia legislation.

Many tens of thousands of feeble minded adults in the US were compulsorily sterilised (often without their knowledge).

Forced sterilisation of the feeble-minded

Carrie Buck

US Supreme Court (1967): Loving v. Virginia

Virginia's "Racial Integrity Act of 1924", banned marriages between whites and non-whites (a felony punishable by up to 5 years in goal).

In June 1958, Virginian couple Mildred Loving (African American/Native American) married Richard Loving (white) in Washington DC (where mixed marriages were legal). They were arrested in Virginia a few weeks later.

In 1967, based on Fourteenth Amendment Equal Protection and Due Process clauses, the US Supreme Court unanimously declared the Virginia statue to be unconstitutional, stating: - Marriage is one of the "basic civil rights of man"

Anti-miscegenation laws make mixed marriages illegal

UN Convention on Rights of Persons with Disabilities

The treatment of Carrie Buck, and of Richard and Mildred Loving was not about medical issues but about: - gender issues - disability discrimination - racial discrimination

These are (civil) rights issues.

The UN Convention on the Rights of Persons with Disabilities (2006)

http://www.un.org/disabilities/convention/conventionfull.shtml

- Australia is a signatory and has ratified the Convention.

UN Convention on Rights of Persons with Disabilities

The principles of the present Convention shall be:

a. Respect for inherent dignity, individual autonomy including the freedom to make ones own choices, and independence of persons;

b. Non-discrimination; c. Full and effective participation and inclusion in society; d. Respect for difference and acceptance of persons with disabilities as part of

human diversity and humanity;

e. Equality of opportunity; f. Accessibility; g. Equality between men and women; h. Respect for the evolving capacities of children with disabilities and respect

for the right of children with disabilities to preserve their identities.

Article 3 - General principles

UN Convention on Rights of Persons with Disabilities

Article 17 - Protecting the integrity of the person Every person with disabilities has a right to respect for his or her physical

and mental integrity on an equal basis with others.

Article 25 - Health States Parties recognize that persons with disabilities have the right to the

enjoyment of the highest attainable standard of health without discrimination on the basis of disability.

a. Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes;

Sterilisation of People with a Disability in Australia: Children

In 1992, the Australian High Court ruled (re Marion) parents did not have the right to order the sterilisation of their children. The court proposed that sterilisation must be: - must be in the child's best interests - a step of "last resort", when "alternative

and less invasive procedures have all failed or it is certain that no other procedure or treatment will work.

Applications to sterilise children (usually girls) with a disability are now heard by the Family Court.

Australian High Court (re Marion)

Some adults lack the capacity to consent to medical treatment for themselves due to disability.

In NSW sterilisation (including vasectomy and tubal occlusion) can only be consented to by the NSW Guardianship Tribunal itself. The Tribunal may only consent if sterilisation is: - the most appropriate form of treatment - necessary to save life or prevent serious damage to health.

See recent ABC news story Disability advocates recount sterilisations without consent

http://www.abc.net.au/news/2012-02-14/disability-advocates-relay-sterilisation-tales/3829930

Sterilisation of People with a Disability in Australia: Adults

Guardianship Legislation

Sterilisation is Still Happening

The Australian Human Rights Commission website has multiple reports on sterilisation of people with a disability in Australia

http://www.humanrights.gov.au/disability_rights/sterilisation/sterilisation.htm

The Involuntary or Coerced Sterilisation of People with Disabilities in Australia (Australian Human Rights Commission submission to the Senate Community Affairs References Committee)

http://www.humanrights.gov.au/legal/submissions/2012/20121128_sterilisation.html

Barriers

Discrimination is not always overt and may take the form of: - Low expectations that become self-fulfilling and/or internalised by the person

themselves (e.g., segregated education and work)

- Limited information or life experience so the person is not aware of available options

- Barriers to access (e.g., print, complexity, big words, presenting information too quickly)

- Fragmented information about disability services - Rigidity of service models (eligibility criteria; service gaps)

Jenny McCullum: Royal Botanic Gardens Sydney

Beyond Expectations: profiling people with a disability in employment

https://www.det.nsw.edu.au/media/downloads/communityed/disabilityacces/beyondexpvideos/index.html#javascript

Rigidity of Service Models

Labour of Love 7.30 report (4.20 on) Broadcast: 25/09/2007 Reporter: Natasha Johnson http://www.abc.net.au/7.30/content/2007/s2042963.htm Gerard and Tracy Zapelli married last year, but they continued living apart because of the difficulty in finding shared supported accommodation when she was regarded as high needs and he as low.

Their situation is not black and white but often program criteria are, and it was about trying to fit them into those black and white criteria.

15

Language and Disability

Our understanding of disability is conveyed by the language we use to describe disability. For an excellent brief discussion of appropriate language to use when describing people with a disability see:

Foreman, P. (2005). Language and disability. Journal of Intellectual & Developmental Disability, 30(1), 57-59.

How should we understand disability and societys response to it? Approaches to understanding disability

17

The medical model of disability Focuses on impairment and medical condition

Example: the International Statistical Classification of Diseases and Related Health Problems (ICD-10) (WHO, 2001) http://www.who.int/classifications/icd/en/

Useful in identifying the health-care needs of people with a disability

Does not satisfactorily take into account social and environmental influences on functioning and life activities.

18

Holistic Systems The International Classification of Functioning, Disability and Health (ICF)

(WHO, 2001) http://www.who.int/classifications/icf/en/

- Presence of disability depends on a complex interaction between: - Impairment - Activity and/or participation limitation - The persons characteristics - The persons environment

- Outcomes for people with a disability of such interactions depend on commonly held values and beliefs in their society about disability and rights.

19

Components of the ICF and their Interaction (WHO, 2001)

Health condition

(disorder or disease)

Personal factors Environmental factors

Activity Participation Body functions and structures

20

The social model of disability

Disabled people are an oppressed group like other minority groups in society, and the label of disability is used to control a group of people who challenge the norms of society.

Disability is the social oppression, not the form of impairment.

The term disabled people should be used instead of people with a disability, as this is an accurate description of people subjected to a process of disablement.

21

The social model of disability There must be a pursuit of social change rather than medical cure or rehabilitation.

Disabled people arent at fault, society is.

Since disability is a creation of society there should be societal, not individual change.

There must be a focus on rights, not charity (Shakespeare & Watson, 2002, cited by Dempsey & Nankervis, 2006).

DISABILITY AND MEDICAL PRACTICE

Down Syndrome

Named after John Langdon Down, the British doctor who described the syndrome in 1866.

It was identified as being due to trisomy (having 3 chromosomes instead of the usual 2) of the 21st chromosome by Jrme Lejeune in 1959.

People with Down syndrome. Down's Syndrome Association (www.dsa-uk.com)

Down syndrome is a chromosomal abnormality due to an extra copy of the 21st chromosome

http://upload.wikimedia.org/wikipedia/commons/1/11/Down_Syndrome_Karyotype.png

Development and Health

People with Down syndrome are likely to experience: characteristic facial features, short stature cognitive impairment, including language delay developmental delay, including delayed gross and fine motor development congenital heart disease hearing deficits thyroid disorders overweight and obesity (especially women) Alzheimer's disease shorter life expectancy (although this has increased remarkably in recent decades) - median age of survival 61.1 yrs (males), 57.8 yrs (females) (Glasson et al., 2003). Many developmental outcomes can be improved through early intervention,

therapy, education, and good health care.

lifeofguangzhou.com

sportsillustrated.cnn.com

Life Expectancy of People with Down Syndrome (Bittles & Glasson, 2004, Figure 1, p. 283)

Year of Average Life

Publication Expectancy

1929, 1949 9, 12

1963 18

1973 30

1982 35

1991 56

2002 60

How is Such a Dramatic Improvement in Life Expectancy Possible?

Previously a high rate of infant mortality - In 1950s UK only 45% of babies with Down syndrome survived to 1 year - In developed countries 96% now survive to 1 year (80% with congenital heart

abnormality)

Respiratory infections a major cause of mortality - Introduction of antibiotics in 1950s resulted in reduced infection-related mortality - Deinstitutionalisation may have helped reduce rapid spread of infections.

Congenital heart abnormalities common - Successful (surgical) treatment improves mortality to the same as others without

heart impairments.

- families of affected individuals have advocated equality of access to surgical and transplant procedures at all stages of the lifespan. (Bittles & Glasson, 2004, p. 284)

A crucial issue has been changing attitudes within the community and among health care professionals about the importance of providing the best quality health care to people with Down syndrome. - High quality health care is now seen as a right, which is enforceable via anti-

discrimination legislation.

No access to treatment

Friend (born 1967) with Down syndrome and intellectual disability Born with a congenital heart defect (common but treatable issue for

people with Down syndrome)

Institutionalised in infancy Heart defect left untreated. He is now disabled by Eisenmengers

syndrome (pulmonary hypertension, polycythaemia, cyanosis, and restricted physical activity).

This appears to be a case of disability discrimination.

Disability Discrimination?

Developmental Disability Medicine

Australian Association of Developmental Disability Medicine (AADDM) http://www.aaddm2012.com/content/about-us

Throughout Australia there are a number of specialist clinics on Developmental Disability Medicine, that provide lots of excellent resources as well as: - undergraduate and postgraduate education - clinical support and consultancy - clinical placements for registrars - research programs

Specialist clinics on Developmental Disability Medicine

In Melbourne, the Centre for Developmental Disability Health (CDDHV) http://www.cddh.monash.org/index.html In Brisbane Queensland Centre for Intellectual and Developmental Disability http://www2.som.uq.edu.au/som/Research/ResearchCentres/qcidd/Pages/

default.aspx

In Sydney, NSW Developmental Disability Health Unit http://cds.org.au/index.php/clinical-services/nsw-dd-health-unit

Vaccination and Autism: A rare case of a prominent journal (The Lancet) retracting a published, peer-reviewed paper

Does MMR vaccination cause autism?

The original study by lead researcher Andrew Wakefield and colleagues (Lancet, 1998) reported: - Onset of behavioural symptoms was associated, by the parents, with

measles, mumps, and rubella vaccination in eight of the 12 children, We identified associated gastrointestinal disease and developmental regression in a group of previously normal children, which was generally associated in time with possible environmental triggers.

Lancet (1998), vol. 351, p. 637.

- Wakefield, A.J., Murch, S.H., Anthony A. et al. (1998). Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children. Lancet, 351, 637641.

Other Research

Numerous more recent studies have been unable to find a link between vaccination and autism.

Even so, some advocacy groups strongly believe in the link and urge parents not to vaccinate their children.

Retraction by The Lancet http://press.thelancet.com/wakefieldretraction.pdf

On 2/2/10 the Editors of the Lancet stated: Following the judgment of the UK General Medical Councils Fitness

to Practise Panel on Jan 28, 2010, it has become clear that several elements of the 1998 paper by Wakefield et al. have been proven to be false

we fully retract this paper from the published record

ABC Radio National Rear Vision: The MMR Vaccine Scare (broadcast 24/2/10)

http://www.abc.net.au/rn/rearvision/

Contact Details Roger J. Stancliffe Professor of Intellectual Disability

Faculty of Health Sciences

The University of Sydney

Email: roger.stancliffe@sydney.edu.au

37

References

Bittles, A. H., & Glasson, E. J. (2004). Clinical, social, and ethical implications of changing life expectancy in Down syndrome. Developmental Medicine & Child Neurology, 46, 282286.

Dempsey, I., & Nankervis, K. (2006). Conceptions of disability. In I. Dempsey & K. Nankervis (Eds.), Community disability services: An evidence-based approach to practice (pp. 3-26). Sydney: UNSW Press.

Foreman, P. (2005). Language and disability. Journal of Intellectual & Developmental Disability, 30(1), 57-59.

Glasson E. J., Sullivan S. G., Hussain R., Petterson B. A., Montgomery P. D., & Bittles A. H. (2003).Comparative survival advantage of males with Down syndrome. American Journal of Human Biology, 15(2), 192-195.