Advocacy: People With Intellectual Disabilities

This essay will look at the role of advocacy in relation to representing the views and interests of people with intellectual disabilities attending a day service. It will briefly look at the historical evolution of advocacy in general and then look in particular at collective self-advocacy and citizen advocacy models and how these are employed for the social inclusion of people with intellectual disabilities.

Day services for people with intellectual disabilities are considered to be one of the major service providers but traditionally have contributed little to the promotion of “social inclusion” and self-determination (Fyson and Ward, 2004:64). Advocacy has a role in changing these services by working in partnership with service users to increase social participation and opportunities for everyday experiences such as employment and further education (Fyson and Ward, 2004).

From reviewing and reading literature on the topic it is clear that there is much debate as to what advocacy means. Bateman (2000) suggests that the different types of advocacy can all be interpreted differently and therefore there is no universal definition of advocacy. But all “have a common theme; helping another person obtain something from someone with power” (Bateman, 2000:16).

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The evolving of advocacy into the multi-model that it now is has come from citizen advocacy and the representation of citizen’s views (Henderson and Pochin, 2002). The key principles within advocacy are “respect for the client’s view, as much empowerment and as little dependency for the client as possible, facilitation of informed choices, the advocate to be independent and choice of advocacy for the client” (Woods, 2003:49).

A key factor of advocacy is that it allows for the expression of views and wishes of marginalised people who are often relying on advocacy as a means of creating awareness of social issues but also as a means to assess their rights and entitlements (Henderson and Pochin, 2002). The attainment of rights is a key part of advocacy and that advocacy has a role in creating awareness of injustices (Bateman, 2000). But in relation to people with disabilities the rights are limited and are not enforceable by law (Lawson, on the Web, nd). “A right can be defined as any claim that is morally just or legally granted as allowable” (Final Report, 1995, cited in Forum for People With Disabilities, 2004:57).

Historically people with intellectual disabilities have been socially excluded from society by prejudice and discrimination (About Learning Disabilities, on the Web, nd). Social exclusion rather than social inclusion was the norm where people with intellectual disabilities were excluded from their communities by residing in institutions outside the community and were not granted the same opportunities as others in the general population.

Social inclusion in relation to people with disabilities is to increase their participation within society and to support them to have independent lives (Office for Social Inclusion, 2003). In relation to social inclusion many organisations such as “voluntary and community organisations” have used the concept of advocating for their members to improve social inclusion and participation (Woods, 2003:21).

Traditionally the perceptions regarding people with disabilities was to see the person based on their perceived limitations but that these were challenged by disability groups that rights held by other citizens to also be attributed to people with disabilities (Barnes and Mercer, 2003).

The European Social Charter (1996) states that people with disabilities have “a right to independence, social integration and participation in the life of the community” (Lawson on the Web, nd:8).

Advocacy in relation to people with intellectual disabilities allows that “each person has value” (Gray and Jackson, 2002:9), which is in direct contrast to the historical view held by society of devaluing people with intellectual disabilities. That “people with learning disabilities are citizens with the same rights and responsibilities as other citizens” (Gray and Jackson, 2002:10).

The most effective model of advocacy is that which matches the service user’s needs but there is often the need to employ more than one type of advocacy where the general overall aim is to promote the attainment of skills for self-advocacy (Woods, 2003).

In relation to the needs of people with intellectual disabilities they can be considered to be the most complex in that the disability may not just have cognitive repercussions but physical disabilities also. The ranges of the intellectual disability that they are experiencing can result in diminished ability to communicate and cognitive ability. The complexity of their disabilities can result in limited opportunities for self-determination and being excluded socially from society (Inclusion Ireland, on the Web, 2003).

A key challenge for a person with intellectual disabilities is to be seen as an individual that has the same rights and needs even though they have a greater dependency on their care-givers because of their intellectual disability (Inclusion Ireland, on the Web, 2003).

Self-advocacy Model

Self-advocacy can be employed for people with intellectual disabilities and that organisations need to support opportunities for self-determination in relation to their lives (Inclusion Ireland, on the Web, 2003). Self-advocacy is defined as “a process in which an individual, or group of people, speak or act on their own behalf in pursuit of their own needs and interests” (Bateman, 2000:18). Key to self-advocacy is that the individual should have the skills that allow them to represent on their behalf (Woods, 2003).

According to Bateman (2000:18) the most influential form of self-advocacy is that of “collective advocacy” where people with similar needs come together as a group to seek a particular outcome “the sum of the whole is greater than the sum of the individual parts”. The collective self-advocacy model has some of its roots in trade unionism where during the 1940’s collective advocacy took place during the World War II to challenge the welfare system. Civil rights movements during the 1960’s in America drove collective self-advocacy regarding the rights for marginalised people (Bateman, 2000). As societies have modernised the concept of community has been lost to the importance of the individual but collective self-advocacy is continually used by groups to bring change on a macro level (Bateman, 2000).

Collective self-advocacy is often the most effective form for people with intellectual disabilities in that for many as an individual standing alone the choices that they have are to agree to the services on offer or have none (Whitehead and Hughey, 2004). Group self-advocacy is of importance to people with intellectual disabilities because it can provide the opportunities to gain skills in communication, increased confidence and to express their view in relation to their rights and wishes (Woods, 2003). Shoultz (1992, cited in Woods, 2003) states that group advocacy can benefit people who do not have verbal communication skills to gain the confidence and skills to advocate for the group and themselves. An example of collective self-advocacy is People First, in Canada, People First have as a collective self-advocacy model challenged that no person with an intellectual disability will be forcibly required to be sterilised (Bateman, 2000). Therefore in order to challenge discrimination that many people with disabilities have joined collective self-advocacy groups to fight social injustices (Whitehead and Hughey, 2004).

The characteristics of collective self-advocacy are that the group share experiences and knowledge to work together to address injustices (Henderson and Pochin, 2002). Collective self-advocacy promotes action on a macro level so that the vast majority of the collective group will benefit from the collective action that is being advocated for (Bateman, 2000). Woods (2003:36) supports this by stating collective self-advocacy can directly change services within an organisation and can be a resource for “dealing with the day-to-day issues of participants”. An illustration of this in relation to the scenario of the day service could be that the individuals together agree that a change in service delivery is required to enhance their independent living skills such as learning to operate the phones and participate as receptionists at the centre as a means to gain employment.

There are different types of collective self-advocacy but the most common are the “groups based in services” (Woods, 2003:35). This is where the group is within a centre or service and generally meet during a calendar month to discuss issues that are of concern to the group members. A key worker or staff member may be needed to act as facilitator (Woods, 2003). A key aspect of self-advocacy in general is that it is driven by the person and in this way collective self-advocacy groups often represent a particular issue or group (Henderson and Pochin, 2002). Organisations such as St. Michael’s House and Enable Ireland have group self-advocacy within their organisations (Woods, 2003).

Collective self-advocacy can often be the ground breaker in provision of advocacy services within an organisation (Woods, 2003). Collective self-advocacy could be viewed as a means to support inclusion and participation by encouraging person power to impact on service development in general and to promote changes in social policies (Whitehead and Hughey, 2004). In terms of participation levels group advocacy within an organisation would be higher than other forms of group self-advocacy (Woods, 2003).

A criticism of collective or group self-advocacy in relation to people with intellectual disabilities could be that the term self-advocacy implies that the person is directly representing themselves. But that in reality this is often not the case as in order to self-advocate a person with intellectual disabilities often requires a professional person to act as a support (Bateman, 2000).

Also in relation to group self-advocacy within a service a criticism has been as to what degree are the choices made and available to the group members free from influence from the service and staff that may be facilitating the group advocacy meeting. Independent group self-advocacy away from the service has been suggested as a means to remove any potential service influence but that this may reduce the participation as it is not based within the service that is being used. Another criticism is that within the group self-advocacy that the focus can be based on the views and opinions of the most verbally expressive service users and therefore may not reflect the group as a whole (Woods, 2003). Also collective or group self-advocacy although initially established to challenge for collective needs or rights sometimes the group then becomes a service provider which would challenge its objectivity in relation to representation of wishes (Bateman, 2000).

Citizen Advocacy Model

Another advocacy model that is considered to be effective for people with intellectual disabilities is citizen advocacy (Woods, 2003). Citizen advocacy relates to

“the persuasive and supportive activities of trained selected volunteers and co-ordinating staff…. working on behalf of people with disabilities who are not in a good position to exercise or defend their rights as citizens” (Woods, 2003:40).

Citizen advocacy is considered to be supportive of people with intellectual disabilities who are often more dependent on the services that they are utilising and often more dependent on other people to advocate on their behalf (Walmsley, 2002).

Citizen advocacy developed in the 1960’s in America with the civil rights movement (Bateman, 2001). It was developed into the disability sector as a result of parents with children with disabilities observing that they received more relevant services when someone acted on their behalf as an advocate (Bateman, 2000).

O’Brien (1987, cited in Bateman, 2000:24) suggests that citizen advocacy has at its core the concept of the “valued citizen” who is not paid and is not a member of a service provider organisation. Woods (2003:40) also supports the concept of the “valued citizen” as being “someone who does not have a problem getting heard, working with a person who is discriminated against”. Another element of citizen advocacy is that through citizen participation actively advocating for the wishes and rights of the person that they are in turn challenging traditional perceptions of people marginalised within society to have full inclusion and participation as all citizens (Woods, 2003).

The characteristics of citizen advocacy are that the advocate is independent from the organisation or service that the person is using or attending, that the advocate is not a relative and is not paid for advocating (Forum of People with Disabilities, 2001). The nature of the needs of a person “with significant disabilities” would suggest that citizen advocacy is best met when the advocate can support in the long term (Woods, 2003:41). People with intellectual disabilities have varying levels of needs and degrees of intellectual disability and citizen advocacy could be considered to be supportive of people with intellectual disabilities who could be considered to have greater needs (Woods, 2003).

This model and has its foundation in “normalisation and social role valorisation” (Walmsley, 2002:26). Normalisation being that people with disabilities should have opportunities to experience everyday occurrences (Walmsley, 2002). Examples of citizen advocacy are Ealing and Harrow Citizen Advocacy and the Galway Citizen Advocacy Project as cited by Woods, (2003). The importance of citizen advocacy in relation to social inclusion is that by working in partnership with the person with intellectual disabilities to have every day opportunities as other members of the general population that it can reduce exclusion through its concept of giving value to the person (Fyson and Ward, 2004). This can result in challenging the societal view that with disabilities are a “homogeneous group” (Butler and Forrest, 1991, cited in Bateman, 2000:25). Citizen advocacy can be a means of identifying gaps in service provision and challenge discrimination and social exclusion (Bateman, 2000). The advocate relationship develops over a long period of time and that this creates opportunities to consistently support the person with intellectual disabilities to build their skills and their self-belief (Woods, 2003).

The citizen advocate has two functions one of representing the person and secondly to act as a social medium by the personal relationship that is established between the advocate and the person (Woods, 2003). The actual volunteering of time to create a relationship is an important aspect within citizen advocacy in that for many people with intellectual disabilities the range of social opportunities available to them may be more limited than other people with disabilities (Woods, 2003).

A criticism of citizen advocacy is that because of its voluntary nature that the advocate can be viewed by services to not have the knowledge or expertise to fully advocate on behalf of the person with intellectual disabilities (Forum of People with Disabilities, 2001). Another criticism is that conflict in terms of obtaining needs and rights can be an element of advocacy and that an inability to understand the function of conflict to create change can prevent citizen advocacy being effective (Bateman, 2000). Some self-advocacy groups have criticised citizen advocacy that it is maintaining the dependency bias that society assumes in relation to people with intellectual disabilities (Henderson and Pochin, 2002). Citizen advocacy which is often employed as a model for people with intellectual disabilities has in its application supported “that people with learning difficulties need the intervention of able-bodied advocates if their wishes are to be taken seriously” (Pochin, 2002:107). But citizen advocacy could be considered to be supportive of social inclusion by its concept of valuing all people and promoting community participation (Whitehead and Hughey, 2004). Another criticism is that citizen advocacy requires time and commitment from the advocate and that a challenge is to find citizens that have the time available to give (Forum of People with Disabilities, 2001).

Conclusion

In conclusion advocacy should include that every individual should be listened to and to have an active part regarding the outcomes of their life (Woods, 2003). Advocacy has at its core the attainment of rights and needs (Bateman, 2000). Social inclusion could be considered to be supported by the principles of advocacy that promote empowerment and choice for people with intellectual disabilities (Woods, 2003). But for both advocacy models in relation to people with intellectual disabilities the greatest challenge seems to be that of asserting their right whether moral or legal to avail of the everyday opportunities that the general population can experience (Forum of People With Disabilities, 2001). That society generally questions the ability of a person with intellectual disabilities to self-determine and this has impacted on the development of advocacy models for people with intellectual disabilities (Gray and Jackson, 2002). The provision of advocacy services for people with intellectual disabilities although attempting to challenge inequalities that unless people with disabilities have a legalised right to services that “advocacy is meaningless without rights” (Bateman, 2000:43). That by not enforcing rights regarding services and no proper recourse through the legal system because these services are not rights that advocacy cannot be truly effective in supporting social inclusion (Bateman, 2000). That enforcing rights to services would support the client becoming the consumer and could be an effective way of using advocacy to create social inclusion (Bateman, 2000). A challenge for both models is the funding required is often allocated to other supports and this can be contributed in some ways to the fact that advocacy is not universally defined and is not universally legislated for (Bateman, 2000).