Running head: THE INDEPENDENT LIVING MOVEMENT 1

The Independent Living Movement

Guinevere Hedden

NJCU
THE INDEPENDENT LIVING MOVEMENT 2

In 1770, the man who would later pen the words that would lead to Americas

emancipation from Great Britain stated,

Under the law of nature, all men are born free, every one comes into the world

with a right to his own person, which includes the liberty of moving and using it

at his own will. This is what is called personal liberty, and is given him by the

Author of nature

Just as Jefferson describes in the passage above, it is our natural right to live our lives according

to our own free will. Despite the facts that Jefferson wrote the above statement in 1770, and that

many individuals have since enjoyed such freedoms, many Americans have been denied such

autocracy over their own personage based on their race, religion, ethnicity, national origin, color,

creed, gender, and ability. As many of these groups have fought for their civil rights and

personal liberties through protest and civil action, they have been able to pave the way towards

their goal of equality. To understand the history of the Independent Living movement first

requires that we take a deep and uncomfortable look at our society and accept the darker truths of

our past, acknowledge that we stilleven after 247 yearshave yet to accomplish the goals that

were set for us by those lauded forefathers who sought to establish the free world, and accept the

challenge to actualize the dreams of equality for everyone.

The philosophy and aim of the Independent Living Movement seeks to do just that.

Hasler (2003) puts it simply as he says,

The philosophy of independent living rests on a simple dream disabled people

living on a basis of equality with non-disabled people. Achieving that simple

ideal requires complicated changes dismantling the apparatus of welfare,

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providing strong legal protection for rights, creating new sorts of support [] to

boldly go where everyone else has gone before! (p. 7)

Unfortunately, this continues to be an ongoing struggle, and the simple concept that all human

life is of value is not one that is reflected in the structure and attitudes of our society, however

the Independent Living Movement continues to fight for the agency and empowerment of

persons with disabilities to live fulfilling lives (Hasler, 2003, p. 5).

Brown (2009) cites the words of black-American author, James Baldwin, to illustrate the

experience of a marginalized member of society:

When I was young, for example, it was an insult to be called black. The blacks

have now taken over this once pejorative term and made of it a rallying cry and a

badge of honor and are teaching their children to be proud that they are black []

to be liberated from the stigma of blackness by embracing it is to cease, forever,

ones interior argument and collaboration with the authors of ones degradation

(p. 3)

By including this anecdote, Brown works to elucidate the plight of people with disabilities, as

they attempt to rally around the concept of their own identity:

As long as we buy into the mainstream notion of success through overcoming we

are submitting to an ideal to which we cannot possibly remain true. No matter

what we do, we remain disabled [] Living in a society which forces us to

examine ourselves by inapplicable standards is the plight in which every

individual with a disability must find ourselves. The very word, disability,

implies in some way a difference from the more positive word ability. Each of

us knows, however, people with disabilities who are both more and less capable in
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various endeavors than our nondisabled peers. Rather than continuing to fight to

fit into a nondisabled world, many of us have argued for decades that that world

must be changed to embrace and adapt to us [] I suggest that these changes are

not enough. We must also embrace ourselves. As we are. With our disabilities.

With our varied needs. With our diverse strengths and weaknesses. To embrace

ourselves as we know ourselveswith our disabilities. (pp. 3-4)

In his portrayal of the many struggles, accomplishments, and achievements of various

persons with disabilities, Brown also explains how the refusal to accept and embrace

ones own disability, and the efforts to overcome or hide it, hurts the initiative of the

movement as a whole:

FDR could be a hero among disability activists. But we know too much about his

endeavors to hide his polio and its effects. We are reluctant to claim him, because

he too often seemed unwilling to claim us [] We, those of us with disabilities,

have been reluctant, even ashamed to share what our disabilities have signified in

our lives. And with good reason. We have been shunned by our communities,

forced into institutions by our families, and even killed by our leaders. (p. 2)

Therein lies the struggle for the Independent Living Movement, as persons with disabilities must

not only overcome adversity and obstacles within society, but also within themselves. The

history of this movement illustrates the passionate and tireless efforts of heroic, or as Brown

posits mythic, individuals who have worked to enact significant change in order to realize their

dream of equality for persons with disabilities, so that they might enjoy the freedoms and

liberties that every person should enjoy (2009).

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Tragically, the fight for fair and equal treatment of persons with disabilities has been a

long-fought and arduous battle. After witnessing the inhumane and horrific treatment of the

poor, mentally ill, prisoners, blind, and deaf in the mid to late 1800s, Dorothea Dix lobbied for

substantial improvements to their care. While she is recognized and respected for her efforts to

change the national perception and treatment of these individuals from burdens to beings, she

was unable to radically transform the attitudinal, environmental, and institutional barriers that

existed and continue to exist within our society that perpetuate the unjust treatment of persons

with disabilities.

It wasnt until the 1970s, when the movement gained significant momentum again. In

1972 Wolf Wolfensberger advocated for the principle of normalization and

deinstitutionalization of these individuals so that they might live lives that were normal or as

close to normal as possible, rather than being warehoused in institutions away from their families

and communities (McDonald & Oxford, 2008). This inspired many care-providers and parents

of individuals with disabilities to form a movement that worked to make Wolfensbergers

principle a reality.

The self-help movement inspired by Alcoholics Anonymous, and the radical protests

and courage illustrate by the Civil Rights movement of the 50s and 60s served to inspire

individuals with disabilities to fight for their own personal liberties (McDonald & Oxford, 2008).

Support groups and self-help literature flourished in the 70s, which created a safe environment

and culture for individuals to come to terms with, accept, and celebrate their differences.

Individuals with disabilities were able to find such groups and develop support networks of peers

with similar disabilities who were able to assist and to understand each other (McDonald &

Oxford, 2008). This experience gave persons with disabilities the strength and courage to
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question and challenge the perceptions of the medical community, which had so long established

the perception that the individuals disability was a problem to be fixed (NILP, 2017).

Through a holistic approach to health care, peer support, and healthy perceptions of

self, there was a demystification of the medical community and a shift away from the power-

based, authoritarian medical model to a paradigm of individual empowerment and responsibility

for owning, defining and meeting ones own needs; with this shift came a perspective of

consumerism, which gave persons with disabilities the confidence to advocate for control over

the choices and options of goods and services available to them (McDonald & Oxford, 2008;

Ratzka, 2013).

In 1972, Ed Roberts, a post-polio quad, founded the Berkeley Center for Independent

Living in California. Roberts faced a great deal of adversity as a result of his disability: his high

school had denied him a diploma as he had not been able to satisfy the requirements of PE and

Drivers Ed., and he was only able to receive his diploma after his mother tirelessly petitioned

the school board (Leon, 2017); the California state vocational rehabilitation agency had rejected

Roberts in 1961, as his disability had rendered him, in their opinion, unemployable; the

University of California Berkeley initially rejected him, as they felt that their previous efforts of

providing an educational opportunity to cripples had been fruitless (McDonald & Oxford,

2008). The University changed their decision and ultimately agreed to accept his application

after he challenged the cause of their rejection on the basis of his disability, and he was then

admitted with the strict proviso that he live exclusively at the campus medical facility at Cowell

Hall where they could accommodate his iron lung (NILP, 2017; McDonald & Oxford, 2008;

Leon, 2017). Only with the support of his brother, who was also a student, Roberts was able to
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attend classes and obtained his bachelors degree and masters degree in political science within 6

years.

Roberts many experiences with rejection and obstruction fuelled his effort to make

education and society accessible for all. While a student, Roberts partnered with the school to

establish the Physically Disabled Students Program, an advocacy program that would be run by

and for students with disabilities. They worked to provide wheelchair repair, attendant referral,

peer counseling, and other services that would enable them to live in the community (Leon,

2017). In 1972, Roberts and other members of the Physically Disabled Students Program came

together to apply for federal funding to establish the first Center for Independent Living, which

would assist students to live within the community with whatever supports they needed to

achieve their goals and live a life as close to normal as possible.

At the same time, Congress attempted to pass a rehabilitation bill in support of

independent living, however President Nixon vetoed the bill. Protests organized by disability

activists such as Judy Heumann helped to fuel Congress eventual override of the Presidents

veto. The Rehabilitation Act of 1973:

No otherwise qualified handicapped individual in the United States shall, solely

by reason of his handicap, be excluded from the participation in, be denied the

benefits of, or be subjected to discrimination under any program or activity

receiving federal financial assistance. (McDonald & Oxford, 2008)

In 1975, Governor Jerry Brown recognized Roberts efforts and appointed him to be the

director of the very agency that had deemed him unemployable over a decade before; he

served as the director of the California Department of Vocational Rehabilitation for eight years

(McDonald & Oxford, 2008). In this role, Roberts worked to establish independent living
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centers throughout the state, and lobbied for disability rights in the United States and around the

world (Leon, 2017). He is widely considered to be the father of the independent living

movement.

In 1977, advocates for Independent Living and people with disabilities held

demonstrations across the country arguing for Joseph Califano, Secretary of Health, Education,

and Welfare, to issue regulations that would support the implementation and enforcement of the

Rehabilitation Act of 1973. One group of people with disabilities occupied a federal office

building in San Francisco for nearly a month to ensure that his regulations were acceptable

(McDonald & Oxford, 2008).

Civil Rights Activist, Wade Blank, not only served as a champion and advocate for the

independent living movement, but also worked to make meaningful change in public

transportation. In 1978, Wade made the determination that public transportation was integral for

people with disabilities to be able to live independently within the community; Wade founded

ADAPT, or the Americans Disabled for Accessible Public Transit, which was the nations first

grassroots, disability rights, activist organization (McDonald & Oxford, 2008). The protests

and actions of ADAPT gained the support of a nation, and in 1990, the Secretary of

Transportation, Sam Skinner, enacted a law that had actually been passed in 1970 that had

required wheelchair lifts to be installed on new buses; ADAPT had worked to overcome the

block that had been instituted by the transit industry had been maintaining for 20 years

(McDonald & Oxford, 2008).

The Independent Living paradigm, developed by Gerben DeJong in 1979, proposed a

shift away from the medical model that had so long governed the treatment of persons with

disabilities to a community model (McDonald & Oxford, 2008). This community model
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focuses on the individual with a disability as the solution and not the problem and provides

persons with disabilities with the necessary peer support, advocacy, skills training and

information and referral to achieve as normal a life as possible (NILP, 2017). Like so many

Civil Rights and Human Rights movements that preceded it, this community model identifies the

deficiencies within the community that work to segregate or discriminate against persons with

disabilities, and fights the necessary battles to address these deficiencies. DeJongs paradigm for

Independent Living,

posited that such issues as social and attitudinal barriers were the real problems

facing people with disabilities. Solutions could be found in changing and fixing

society, not people with disabilities. Most important, decisions must be made by

the individual, not by the medical or rehabilitation professional. (McDonald &

Oxford, 2008)

The National Council on Independent Living (NCIL) was founded in 1980 by Max

Starkloff, Charlie Carr, and Marca Bristo. This organization is consumer-controlled and

promotes the rights and empowerment of people with disabilities (McDonald & Oxford, 2008).

In 1990 the Americans with Disabilities Act (ADA) was passed and dictates that all of

American Society be accessible to all persons with disabilities. The ADA is established to

provide for and protect any persons with disabilities, and those who provide direct support or

care of those individuals. In 1999, the Olmsted Decision added Title II to the ADA, insisting

that,

The Court held that public entities must provide community-based services to

persons with disabilities when (1) such services are appropriate; (2) the affected

persons do not oppose community-based treatment; and (3) community-based

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services can be reasonably accommodated, taking into account the resources

available to the public entity and the needs of others who are receiving disability

services from the entity. (ADA)

In 2008, the ADA Amendments Act was passed in effort to broaden the accepted definitions of

what constitutes a disability, it has since been narrowed by U.S. Supreme Court decisions

(JAN Web Team, 2012).

The Independent Living Movement works to aid those in realizing their full potential and

live their lives according to the freedoms granted by the ADA. At the same time, Independent

Living also believes in the right to risk taking and the right to fail as part of the learning process

and advocates that persons with disabilities be given no more support than is deemed necessary

to achieve as normal a life as possible and to life a full and fulfilling life within mainstream

society (NILP, 2017). As Philip Mason explains, [o]ur dream was that disabled people would

be enabled to fulfill their roles in terms of taking the opportunities society offers and meeting the

responsibilities society requires (Hasler, 2003).

Hasler argues that the philosophy of this movement is centered around control and

choice, citing Adolf Ratzka: disabled people need to be in charge of their own lives, need to

think and speak for themselves without interference from others (p. 3). This belief stems from a

long history of marginalization and disenfranchisement, and the movement as a whole subscribes

to the firm belief that persons with disabilities should play an integral role in the development of

an agency for change that will tackle problems from their perspective. To truly approach the

problems faced by persons with disabilities, one must consider them holistically. Rather than

considering the practical issues such as poverty or unemployment, Hasler avers that it is

imperative that change and reform come from those who share and can relate to the experiences
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of the people that the Independent Living Movement seeks to support. Non disabled individuals

who seek to help must realize that non disabled do have a role to play, but only if they are

prepared to share power, share resources and challenge exclusion (p. 4).

Many have begun to adopt the term inclusive living to adopt a culture of inclusivity

and reject notions of isolation that the term independent might suggest (p. 4). By adopting the

inclusive mindset, the movement has established a community or system that can work to

dismantle the barriers that persons with disabilities face within mainstream society. By

providing the seven basic needs Independent Living Centers provide individuals with the

information regarding their options, encouragement and guidance by peers who can relate to the

disabled persons experience, recommendations for suitable and accommodating places to live,

provisions of technology and devices that will reduce the individuals reliance and dependence

upon others, assistance with everyday tasks, transportation, and access to places they want to go

(p. 4).

Overall, it is the belief of the movement that the individual does not require rehabilitation

in order to exist within the existing world, rather the existing constructs of our society and world

need to adapt to include and accommodate the individual. By reviewing the history of the

movement, it can be observed that individuals with disabilities are quite capable of living full

and independent lives, but need a little support to gain the confidence and resources to do so.

There are Independent Living Centers scattered throughout the US to support the goals and

philosophy of this movement, however it is important that society, in general, learn about the

struggles and plights of individuals with disabilities in effort to make our world a more

welcoming and inclusive place, where each and every person can enjoy the personal liberties to

which they are naturally entitled.

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REFERENCES

ADA. (n.d.). Olmstead: Community Integration for Everyone. Retrieved February 02, 2017,

from https://www.ada.gov/olmstead/olmstead_about.htm

Ansorge, J.T. (2014). Global Disability: Reality, Theory, Practice. Retrieved January 25, 2017,

from https://www.independentliving.org/docs5/Global-disability2014.html

Brown, S.E. (2009). Creating a Disability Mythology. Retrieved January 25, 2017, from

https://www.independentliving.org/docs3/brown92a.html

Hasler, F. (2003). Philosophy of Independent Living. Retrieved January 25, 2017, from

https://www.independentliving.org/docs6/hasler2003.html

JAN Web Team. (2012). The Americans with Disabilities Act: A Brief Overview.

Retrieved February 02, 2017, from http://askjan.org/links/adasummary.htm

Jefferson, T. (1770). Thomas Jefferson on Politics & Government. Retrieved January 25, 2017,

from http://famguardian.org/subjects/politics/thomasjefferson/jeffcont.htm

Leon, J. (2017, January 23). Ed Roberts. Retrieved February 02, 2017, from

https://www.britannica.com/biography/Ed-Roberts

McDonald, G. & Oxford, M. (2008, May 29). Independent Living History: A Brief History of

the Independent Living Movement. Retrieved January 25, 2017, from

https://www.accessliving.org/Independent-Living-History

NILP. (2017). History of the Independent Living Movement. Retrieved January 25, 2017, from

http://www.nilp.org/about-us/history/

Ratzka, A. (2013). Independent Living for people with disabilities: from patient to citizen to

customer. Retrieved January 25, 2017, from

https://www.independentliving.org/docs7/Ratzka-patient-citizen-customer.html
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