Advocacy and Lobbying

…future… Advocacy and Lobbying Project Partners Meeting 2007 C. Mahesh CBR Forum, 14, CK Garden, Wheeler Road Extn, Bangalore – 560 084 Tel. 080-25497387 or 25497388, cbrforum@blr.vsnl.net.in advocacy.cbrforum@gmail.com

Understanding Disability • Disability as a deviation from the ‘normal’ in the physical, mental, psychological or sensory areas of functioning is popular especially with doctors/ rehabilitation professionals • This understanding is limited to the individual’s medical condition

The question is “Who defines”? • These definitions based on only the medical condition/ functional limitation have been challenged by people with disabilities • Defining disability has gone beyond physical/ sensory or other bodily limitation

Understanding Disability issues as Human Rights • “disability is the disadvantage or restriction of activity caused by a society which takes little or no account of people who have impairments and thus excludes them from mainstream activities” • Therefore, like caste or sexism, disability is described as a consequence of discrimination and disregard

Understanding Rights • Disability is simply not lack of sight/ hearing/ walking it is rather denial of the basic entitlements (basic rights) in life (health, education, livelihood, dignity, choice, opportunity) • The strategy is therefore about both rights and realization of the rights through equal access to services and opportunities

Rights Based Approach • Any human being is holder of rights • Obligation on the part of the state to respect, protect and fulfill it • It is just not charity or economic development but a process of enabling and empowering those who do not enjoy the economic, social, cultural and political rights to claim their rights • It is a process of creating better human beings who are self confident, capable and responsible citizens. • Making use of the Laws - to protect your rights

A Right to be part of… • Disabled people also have the right to be ‘healthy’ • “We also need to have access to education and livelihoods” • “We also need to have a freedom of choice, to make decisions and live with dignity • Somehow or other “We are not included in the movement and programmes for HEALTH FOR ALL or EDUCATION FOR ALL”

Rights Based Approach Opportunities in current changing environment…

Millennium Development Goals – By 2015 Eradicate extreme poverty and hunger Achieve universal primary education. Promote gender equity & empower women Reduce child mortality. Improve maternal health Combat HIV / AIDS, Malaria & other diseases. Ensure environment sustainability Develop global partnership for development.

Biwako Millennium Framework – Asia Pacific - 2003-2012 Towards An Inclusive, Barrier-Free And Rights-Based Society

UN Convention on the Rights of Persons with Disabilities (UNCRPD) • All human rights and freedoms of all people with disabilities are enjoyed, promoted and protected • The dignity of people with disabilities is respected

Convention on the Rights of Persons with Disabilities • Adopted on 13 Dec 2006 during the 61 session of the UN General Assembly • So far 115 countries have signed this convention • 30 Mar 2007 – India along with 95 other countries has been amongst the first counties to sign this convention • 2nd Oct 2007 India is the first country in South Asia to Ratify this Convention – others 5 being Jamaica, Hungary, Panama, Croatia and Cuba

What do we hope from UNCRPD? • Increase the visibility of PWD, both within the UN human rights system and in society • Clarify the human rights obligations of governments to PWDs, and ensure that governments like ours, make legislative and programmatic changes at various levels to implement their legal obligations under the convention • Establish systems for comprehensively monitoring the human rights situation of persons with disabilities around the world • Establish systems for international cooperation, through which governments, disability organizations and other actors can share knowledge and ideas and work together to improve the lives of PWDs.

Closer home… • The Constitution of India - Art. 21 – Protection of Life and Personal Liberty; Art. 41- “effective provision for securing the right to work, to education and public assistance” • The Persons With Disabilities Act, 1995 • National Trust Act • Right to Information Act • 11th Five Year Plan – 2007-12 – Working Group -Empowering PWDs

To sum up… • The key words of the Declarations/ Policies presented above are centred around rights, equality, respect, dignity, inclusion as equals, participation, freedom of choice, addressing poverty, self-dignity…

Exploring “Opportunities/ Avenues for Advocacy/ Lobbying”

Exploring “Opportunities/ Avenues for Advocacy/ Lobbying • At GP/ Taluk/ Block/ Mandal/ Dist./ State…” • By SHG/ Federations/ CBR Forum with/and its Partners • The primary focus is confining to the poor

A brief review of…. Policies, Programmes - Opportunities and Critical Gaps to be addressed

Policies, Programmes - Opportunities and Critical GapsSome of the areas covered • Education • Health • Livelihood • Social/ Cultural participation • Political participation • Advocacy/ Empowerment

1. Education Policies, Programmes - Opportunities and Critical Gaps

Education – Positive Outcomes • SSA is a great thing that is happening • Education department has started owning the education of CWD in the ‘Education for ALL’ campaign • There has been huge enrolment of CWD is rural area primary schools • There are different models of enhancing inclusion of disabled children in the primary education system which is being practiced in different states

Some challenges Children who are able to access school • Retention and quality of education • Making the education system and school inclusive – the prevailing perception is “Education of CWD is the responsibility of SSA and not of the school” • There is a need to focus on providing support and building capacity of the teacher/ school rather than only supporting the child with disability by Resource Teachers (CRP/ BRP/ DIET/ SCRT)

Some Challenges – Cont…Children who are able to access school • Apart from children with locomotor disability, the schools are facing problems in “education” with all the other categories. • There is lack of appropriate educational materials/ TLM/ strategies • (aids and appliances addresses the need of a limited few and cannot solve the problem for all) • There is a need for - Inclusion of education of disabled children in the mainstream teacher training courses • The current education system is not child centered and there is limited/ no involvement of family and community

Some Challenges Children who are not able to access regular school • No clear cut strategy for the Home based approach? Who decides? • Home based - being addressed sporadically through NGO’s/ volunteers • Home based – There is ambiguity in the purpose of education • There is need for emphasis on life skills and functional education and involvement of the family and community in the process • The fact is the child who requires greater support gets the least

Challenges Before Elementary Education • Inclusion of children with disabilities in ICDS. Is it happening? • The inclusion is sporadic and policy level decisions needs to be framed and implemented • Here again, the child who requires greater stimulation gets the least or is referred to a hospital

Challenges beyond Elementary • A large number of children who go up to class 8 find it difficult to go beyond • Secondary (class 8) and Higher education eludes many, more so in cases of girls

Challenges Need to re-look Roles • ? Can Special schools play a proactive role in enhancing integration/ inclusion of children with disabilities in the mainstream • ? CBR Workers role in Education • ? The role of Min. of Human Resource Development/ Education Dept. • ? The role of Min. of Social Justice and Empowerment • ? The role of RCI

SSA • SSA scheme ensures admission but what after? • What is our role as NGOs to ensure effective education for CWDs? • Inclusion seen at various levels: physical inclusion looks at accessibility; social inclusion cares for participation in various school activities;

2. Health Policies, Programmes - Opportunities and Critical Gaps

Health – Overall Challenges • Many of the disability related health needs are addressed by the Dept. of Social Welfare rather than the Dept. of Health for example certification, rehabilitation services/ devices

Promotion and Prevention • Lack linkages to Disability in the Promotion and Prevention progammes • Disabled people by design are not included in all the programmes – Example – immunisations, adolescent and reproductive health, HIV/AIDS, TB…NRHM • (Many organisations run separate awareness programme for disability rather than including disability components in the existing mechanisms of the Health Dept.)

Promotion and Prevention • In the RCH programme – Adolescent health is one component – in the sensitisation programmes of the adolescents generally disabled adolescents are not included. “Why? Are disabled adolescents sexless?” • ICDS – ICDS is supposed to provide nutrition supplement and developmental stimulation to children. Yet in many instances children who are developmentally delayed and need more stimulation than others are excluded. “Is it not my right to get this basic entitlement like other children?”

Promotion and Prevention • HIV and AIDS is one of the big programmes of the health sector – sensitisation of the general population on prevention aspects happens to be the major component – yet again in many of these programmes disabled people are not included. • Some of the means for creating awareness like ‘hoardings’- when designed doesn’t reach some of the disabled people. • Are disabled people not at risk of having HIV and AIDS?

Curative Health • Lack of appreciation that disabled people’s health needs are same as others – Disabled people’s health needs are perceived as specific to their disability – Example – cases of diarrhoea referred to Dist. Hosp., delivery referred to specialised centres • Lack of physical access • Lack of access to information

Rehabilitation (Health) • Rehabilitative services related to health are very limited • All major rehabilitative needs are not addressed by the Department of Health. And MSJ&E should not try to continue to address this gap

Health – Women with Disabilities • “Are disabled women part of the women’s health programmes?” • Health needs specially for Women with disabilities is not addressed appropriately • Even, specific health progammes related to Women does not mention/ address the needs of women with disabilities

Drinking Water and Sanitation • Safe drinking water and ‘toilets’ are one of the basic needs of any human beings. • When drinking water facilities are being created in the village / slum – does one keep in mind that disabled people also can access the water like others? • In most instances the toilets are designed in a manner that they are inaccessible to many disabled people (both public and at home)

Drinking Water and Sanitation • Do disabled people have Equal Access? • Right to privacy especially for women are often not respected.

Enhancing access to services • Health interventions have a limited role in disability but it does play an important role At times there is no clear-cut demarcation where heath intervention stops and others start • Most people who have any condition that may lead to disability are generally referred to the district civil hospital.

Enhancing access to services • For many a large number of poor people it is always not practically possible to go to the district. • And even when some do reach the district hospital in many instances there are no specific services (eye, ear, mental health..) available for them – certificates • “Enhancing services benefits all”

Need for greater sensitivity • Some appropriate words of acceptance, support, encouragement and facilitating linkages with other developmental activities can make many lives. ‘There are no medicines to cure this…. Your child should go to the local school.’ ‘Have you registered yourself in the employment guarantee programme …Yes you could work.’ • Most people (including health personnel) do not interact directly with people with disabilities – ‘What is her problem?’

The Gaps • In the PRI – the standing committee on health does not include health of disabled people. • In the NRHM – there is not a single word about people who are disabled Why can’t the ASHA (Accredited Social Health Activists) also help the disabled population especially disabled women to be included in the NRHM. ASHA can help disabled people to access health facilities and assist in the process of certification. Why not?

The Gaps • The Ministry of Social Justice and Empowerment is the nodal ministry of disability. In the states it is usually the ministry of Social Welfare. • Why are health related services like aids and appliances for better mobility are primarily not under the health department?

3. Livelihood Policies, Programmes - Opportunities and Critical Gaps

Livelihood • Policies are there for inclusion for PWDs in existing poverty alleviation programmes – which include SGSY, SGRY/ NREGA(?), PMRY, Antodaya, Annapoorna… • However, lack of appropriate strategies and information for inclusion of PWDs have resulted in inadequate utilisation of these provision • Implementers at various levels have limited awareness of the potentials of PWDs (including PWDs themselves)

Livelihood • SGRY (Sampoorna Grameen Rozgar Yojana) - 3% reserved for PWDs – under utilised • SGSY (Swarnjayanti Gram Swarozgar Yojana) through SHG - 3% reserved for PWDs – under utilised – How many PWDs are in SHGs? How many PWDs SHGs have linkages with SGSY? • NREGA – Strategies of inclusion of PWDs is not made explicit

Livelihood – Skill Training • SGSY - How many PWDs are there in the skill training programmes organised by DRDA? • PWDs not part of mainstream skill development/ vocational programmes (agriculture and non agricultural) • Skill training provided in secluded and conventional trades • Are not in tune with current market trends

Livelihood • Despite the fact that most of focus under SGSY programmes is for women - There is very less focus on Livelihood opportunities and skill training for women with disabilities

4. Social/ Cultural participation Policies, Programmes - Opportunities and Critical Gaps

Social/ Cultural participation • Limited opportunities for PWDs esp. WWDs to socialise within the family and community in general – Examples: marriage, access to places of worship, participating in social gathering, recreational activities • Events organised with persons with disabilities are seen to be programme meant ‘only for them and not for us’

Advocacy and Lobbying