[AI] combat Law Article by Nilesh Singit

Pamnani kanchanpamnani at hotmail.com
Wed May 14 01:39:59 EDT 2008


Scent of freedom

What is independent living and why is it significant? Nilesh Singit looks at the phenomenon in the context of the ratification of the UN Convention on the Rights of Persons with Disabilities by India, highlighting the inherent relationship between independent living and living with dignity, a basic right that eludes disabled persons in our country

 

The following are the definitions

given by disabled persons

when asked what independent

living meant to them:

?? A wheelchair to move around

with ease and dignity rather

than drag themselves on the

ground for mobility

?? The ability to communicate easily

through sign language or

communication boards

?? Gainful employment in order

to gain status within his/her

family because those who are

unable to provide for themselves

or their family are

viewed as a burden

?? Asha [name changed] has a

bowel control problem and has

not been able to work or participate

in any social events for 30

years. Independence to her

meant just being able to get out

of the house

There can be numerable such

examples cutting across class, religion

and different kinds of disabilities.

However, the crux of the issue

as each example highlights is that the

disabled person is denied choice,

control, freedom, and equality.

Dr. Adolf Ratzka writes:

Independent living does not mean that

we want to do everything by ourselves,

do not need anybody or like to live in isolation.

Independent living means that we

demand the same choices and control in

our every-day lives that our non-disabled

brothers and sisters, neighbours and

friends take for granted. We want to

grow up in our families, go to the neighbourhood

school, use the same bus as our

neighbours, and work in jobs that are in

line with our education and interests,

and raise families of our own. We are

profoundly ordinary people sharing the

same need to feel included, recognised

and loved."

To summarise, "independent living

is what non-disabled people take

for granted: living your own life,

deciding what you want to do and

making it happen" . The philosophy

behind independent living is primarily

to recognise disabled people as

citizens first and only then as passive

receivers of healthcare, rehabilitation

or social services. The removal of

infrastructural, institutional and attitudinal

barriers and the adoption of

the universal design principle are the

pillars on which this philosophy

rests.

 

Background

Historically, disabled people have

been depicted as victims of circumstance,

deserving pity. Disabled people

are seen as victims who need care

and as persons not capable of looking

after themselves or managing

their own affairs, and therefore needing

charity to survive. From tragedy

and pity stems a culture of 'care'.

Although praiseworthy in many

respects, it carries certain dangers as

it medically classifies, segregates and

often institutionalises disabled people.

"The problem is that medical people

tend to see all difficulties solely from the

perspective of proposed treatments for a

'patient', without recognising that the

individual has to weigh up whether this

treatment fits into the overall economy of

life. In the past especially, doctors have

been too willing to suggest medical treatment

and hospitalisation, even when this

would not necessarily improve the quality

of life for the person concerned.

Indeed, questions about the quality of life

have sometimes been portrayed as something

of an intrusion upon the purely

medical equation" 

 

Independent living

The history of the independent living

movement can be linked to the civil

rights movement of the 1960s and the

fight for the economic, social and

political rights of African-Americans

spearheaded by Martin Luther King.

A major part of these activities

involved the formation of community-

based groups of people with different

types of disabilities who

worked together to identify barriers

and gaps in service delivery. The

independent living movement, in

many ways, also reflects Rawls' idea

that ''. . . all citizens are to have an

equal right to take part in, and to

determine the outcome of, the constitutional

process that establishes the

laws with which they are expected to

comply.'

It was from this understanding

rooted in the civil rights agitation,

that the first centre for independent

living was born with the aim to

address barriers, to develop action

plans, to educate the community and

to influence policy makers at all levels

to change regulations and to

introduce barrier-removing legislation.

It was founded on three basic

principles:

?? The best persons to understand

the needs of disabled people

and how to meet those needs

are disabled people themselves.

?? Comprehensive programmes

that provide a variety of services

can effectively meet the

needs of disabled people

?? Disabled people have the right

to participate fully in society

These principles continue to

influence the philosophy and workings

of CILs all over the world.

 

Challenges

As a philosophy, independent living

is both inspiring and powerful.

However, the main problem with

services is that far from freeing people,

they may actually entrap them.

Some of the threats and challenges to

independent living is that most independent

living centres all over the

world are run by non-disabled persons

as rehabilitation and corrective

centres rather than providing disabled

persons with choice, control,

freedom, and equality. There is a lack

of trained caregivers as in the case of

Asha who is incarcerated due to a

lack of infrastructural facilities and

effective policies. Finally, there is a

general political apathy as disabled

persons are not considered a "vote

bank".

The understanding of independent

living should be that of enabling

a holistic and meaningful life of

equal opportunity and not just an

existence in one's own home. A service

provider's understanding is

often based on a purely practical

approach that is about ensuring the

person in their care gets up and goes

to bed, the kinds of tasks which disabled

people often refer to as the 'bed

and breakfast syndrome'. In other

words, an understanding of basic

survival and not of 'quality of life'.

 

Convention

Asha faces barriers that need to be

overcome, particularly the lack of

attendant services and medical professionals

who try to come up with

workable solutions to enable Asha

and many others like her to live more

independently and on their own

terms. Now as things are, she can

only imagine what it would be like to

live with privacy and independence.

However there is still hope, as people

with similar disabilities are living

successfully in the community.

Asha need not despair, India has

recently ratified the UN Convention

on the Rights of Disabled Persons

(UNCRPD). Soon the disabilities law

in India would ensure an environment

conducive to independent living!!

The drafters of the UNCRPD

included persons with disabilities.

 

The participation of disabled persons

has added first hand experience and

knowledge and helped to address

issues arising out of disability to

which governments had limited

exposure and little or no experience.

The convention exemplifies the

phrase, "nothing about us, without us."

Article-19 of the convention on

living independently and being

included in the community "recognises

the equal right of all persons

with disabilities to live in the community,

with choices to choose their

place of residence and where and

with whom they live on an equal

basis with others and are not obliged

to live in a particular living arrangement.

"Persons with disabilities are

entitled to a range of in-home, residential

and other community support

services, including personal

assistance necessary to support living

and inclusion in the community,

and to prevent isolation or segregation

from the community."

The other Articles of the UNCRD

complement and enhance the experience

of living independently and

each article is interdependent and

closely connected. Article-9 focuses

on accessibility, Article-10 on the

right to life, Article-11 on situations

of risk and humanitarian emergencies,

Article-12 on equal recognition

before the law, Article-17 on protecting

the integrity of the person,

Article-21 on freedom of expression

and opinion, and access to information.

Article-20 addresses personal

mobility, Article-22 the respect for

privacy, Article-23 respect for home

and the family, Article-25 health,

Article-26 habilitation and rehabilitation,

so on and so forth. Article-28

speaks of an adequate standard of

living and social protection and

Article-30 covers the much needed

participation in cultural life, recreation,

leisure and sport.

Independent living is a specific

right: The Tenerife Declaration states:

"Independent living is a fundamental

human right for all disabled people

regardless of the nature and extent of

their impairment." A specific right to

independent living is required because

while disabled people are entitled to

the same human rights as non-disabled

people they cannot benefit from

such rights, unless additional requirements

(arising from the impairment or

from disabling attitudes and/or the

environment) are met: The phrase

'effective enjoyment' in Article-10, is

designed to promote and to ensure the

full and equal enjoyment of all human

rights and fundamental freedoms by

all persons with disabilities.

Article-32 on international cooperation

of the convention also states

that all development programmes

should be inclusive and accessible to

persons with disabilities. "Within

economic capacities" would no

longer be used as an excuse to justify

not taking into account the needs of

disabled persons.

Another vital component of the

convention is the concept of full legal

capacity of persons (Article-12)

endorsed and assimilated with disability

across various issues within

the convention having greatest influence

on Article-19. The recognition of

full legal capacity of a disabled person

on an equal basis as a non-disabled

person ensures that disabled

persons enjoy life on par with others.

 

Policy level requisites in India

In India, independent living is covered

under Chapter-3 of the National

Trust for Welfare of Persons with

Autism, Cerebral Palsy, Mental

Retardation and Multiple Disabilities

Act, 1999 (NTA) whose objectives

are to enable and empower persons

with disability to live as independently

and as fully as possible within

and as close to the community to

which they belong in order to:

?? Strengthen facilities and to provide

support to persons with

disability to live within their

own families

?? Extend support to registered

organisation to provide need

based services during the period

of crises in the family of persons

with disability

?? Deal with problems of persons

with disability who do not have

family support

?? Promote measures for the care

and protraction of persons with

disability in the event of death

of their parent or guardian

?? Evolve procedure for the

appointment of guardians and

trustees for persons with disability

requiring such protection

?? Facilitate the realisation of

equal opportunities, protection

of right and full participation of

persons with disability

But this is not enough as essentials

like accessibility, housing, reasonable

accommodation are not covered in the

NTA. However, in the Persons with

Disabilities Act 1995 there is reference

to affirmative action, non-discrimination

in transport, on the road and in

the built environment to accessibility

and housing.

One of the main prerequisites for

independent disabled people is an

effective housing policy: a policy

that entails non-discriminatory public

works programmes, non-discriminatory

housing subsidies and nondiscriminatory

building codes.

Section-42 of the PWD Act speaks of

appropriate governments and local

authorities framing schemes in

favour of persons with disabilities,

for the preferential allotment of land

at concessional rates for housing,

setting up business; setting up of

special recreation centres. However,

non-discriminatory policies are yet to

be framed. For example, to make

mandatory in all new construction

that is financed and undertaken by

any municipal, regional or state government

agency that barrier-free or

universal design principles are

enforced. Non-discriminatory housing

subsidies mean that programmes

for public or social housing in the

form of incentives, subsidy and tax

rebate are given to builders with the

sole condition that the buildings conform

to accessibility housing standards.

Lastly, strict building codes.

No builder, whether

public or private,

would get a building

permit without showing

that the finished

structure complies

with the spirit of visitability.

The standard

excuse: "We'll build the

house so a ramp could

be added later" should

be penalised.

 

Visitability

The spirit of visitability

is that it's not just

unwise, but unacceptable

that buildings continue to be built

with gross barriers, given how easy it

is to build basic access in the great

majority of new homes, and given the

harsh effects major barriers have on so

many people's lives. These barriers

cause daily, draining drudgery; physically

unsafe conditions; social isolation;

and forced institutionalisation.

The inflexible visitability features are

wide passage doors and at least one

zero-step entrance.

 

Payments for assistance

Another requirement for making disabled

persons like Asha independent

are services that assist with daily

activities. The NTA seeks to

"strengthen facilities to provide support

to persons with disability to live

within their own families"; however

there is no provision or mention of

payment for the services of personal

assistants. As an example good practice

the Swedish Personal Assistance

Allowance Act of 1994 allows persons

with severe disabilities cash

payments from the Swedish National

Social Insurance Fund. Payments are

made for the number of hours of services

required per week for maintaining

a "good quality of life".

Assistance with personal hygiene,

eating, communicating (in the case of

non-verbal persons, including sign

language), household chores, at one's

workplace, in getting around town or

travelling abroad are covered. The

payments are not taxable.

There is an urgent need keeping

in view of the spirit of the UNRCPD

- to move away from the substituted

decision making and legal guardianship

model of NTA where the

guardian takes all decisions on

behalf of and without consultation

with the ward, which sounds the

death knell to choice, control, freedom,

and equality. Full legal capacity with

a supported decision-making

paradigm would keep disabled persons

at the centre of all decisions

affecting them.

Nothing About Us Without Us!

 

REFERENCES

1. Sarah Gillinson, Hannah Green, Paul

Miller, "Independent Living : The right to

be equal citizens"

2. Brisenden, S, Independent Living and the

Medical Model of Disability, 1986

3. J Rawls, A Theory of Justice, Cambridge,

MA: Harvard University Press, 1971

4. Colin Barnes, Independent Living, Politics

and Implications, 2004 http://www.independentliving.

org/docs6/barnes2003.htm

5. http://www.un.org/disabilities/

6. Tenerife Declaration: Promote

Independent Living - End Discrimination

against Disabled People, 26th April 2003.

http:// www.imagina.org/archivos/

archivos_vi/Tenerife%20Declaration.pdf

7. The Bare Act, http://dribombay.tripod.

com/main/national_trust_act.html

8. Affirmative action

9. Aids and appliances to persons with disabilities

- The appropriate Governments

shall by notification make schemes to provide

aids and appliances to persons with

disabilities.

10. Schemes for preferential allotment of land

for certain purposes - The appropriate

Governments and local authorities shall

by notification frame schemes in favour of

persons with disabilities, for the preferential

allotment of land at concessional rates

for: (a) house;(b) setting up business;

c)setting up of special recreation centres;

11. Non-discrimination in transport -

Establishments in the transport sector

shall, within the limits of their economic

capacity and development

for the benefit of persons with disabilities,

take special measures toadapt

rail compartments, buses,

vessels and aircrafts in such a way

as to permit easy access to such

persons; adapt toilets in rail compartments,

vessels, etc etc

12. Non-discrimination on the

road -

13. The appropriate

Governments and the local

authorities shall, within the limits

of their economic capacity and

development, provide for- (a)

installation of auditory signals; (b) causing

curb cuts and slopes; (c) engraving on the

surface of the zebra crossing and of railway

platforms; (e) devising appropriate

symbols of disability; (f) warning signals

at appropriate places.

14. Non-discrimination in the build environment

15. The appropriate Governments and the local

authorities shall, within the limits of their

economic capacity and development, provide

for- (a) ramps in public buildings; (b)

adaptation of toilets for wheel chair users;

(c) braille symbols and auditory signals in

elevators or lifts; (d) ramps in hospitals, primary

health centres and other medical care

and rehabilitation institutions.

16. Concrete Change An international effort

to make all homes Visitable! http://www.

concretechange.org

—The writer is working with

HRLN and has been involved with the

disability movement for over ten years.

As a person with cerebral palsy, he has

strongly advocated the right to accessibility,

filed several petitions in the

Bombay High Court and has been

instrumental in the implementation of

various orders passed

Email: nileshsingit at yahoo.co.uk



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