Disability Studies Quarterly Spring 2003, Volume 23, No. 2 pages 88-100 <www.dsq-sds.org> Copyright 2003 by the Society for Disability Studies |
(Re)Claiming Adulthood: Learning Disabilities and Social Policy in Ontario Timothy D. Epp, Ph.D. |
Keywords: Learning disabilities, adulthood, self advocacy Abstract
This article is primarily based on qualitative research undertaken by the author with PFO and PFW between 1997 1999, which included over one hundred hours of semi structured interviews and participant observation within PFO and PFW. Follow up interviews were also conducted with PFW members in 2003. Self advocacy and discourses of adulthood At one PFO board meeting, board members described what it meant to them to be labeled in a derogatory manner as a child. Participants agreed that the process had resulted in a 'hurt' that they carried with them into the present, that they felt angry or upset about being labeled in this way, and that being labeled had resulted in feelings of exclusion and alienation, confusion, and of being devalued. One executive member said:
Variations of this experience appeared in the life accounts of most self advocates interviewed, presenting the image of childhood as an oppressive past to be overcome through the transition to socially recognized adulthood. To further illustrate this theme, I will present narrative excerpts from interviews with several self advocates. For these individuals, definitions of adulthood followed three key themes: relative independence in decision making and in lifestyle; social integration; and respect. Martha
Martha's memories of her body on the stool were thus linked with images of family and the importance of claiming adulthood in her process of identification. Her post secondary experiences stand in stark contrast to her memories of the special education class. At the age of 26, Martha applied for and received a grant to attend a vocational course at a nearby community college. One of the most positive aspects of college was the sense of integration it provided for Martha.
In her account of adult life, Martha emphasizes the importance of independence (e.g. having her own apartment) and being respected as a 'normal' person with regular employment. These themes also appeared in interviews with other individuals. Rachel
Rachel feels that a key factor contributing to this image of herself as 'dumb' was the staff's denial of her ability to communicate through reading and writing. After she was discharged from the institution at age 36, she attended a school and picked up these skills, proving that she had 'fooled' the institutional staff into underestimating her. In these statements she claimed a sense of personal agency, a triumph over some of the oppressive experiences of childhood and early youth.
Similar to Martha, Rachel spoke of the importance of independence, particularly in the form of having 'my own place', an apartment that she shared with one other person. Rachel had also felt very isolated and separated from her family during this time, and said that institutional life had taken her self-confidence away. After 24 years of living at the institution, staff began to discuss the possibility of placing Rachel in a group home. She lived in several homes in the institution's town, and then moved to Welland. She was placed in the Supported Independent Living Program, through which she was able to get her own apartment. While in the institution, she had heard about People First, and joined the self advocacy organization when she moved to the city. For Rachel, 'speaking up' was a prime reason for joining the group.
Rachel values her current sense of social integration as an adult, and the respect that she has gained through her volunteer experiences. Today, she has worked at a public library through the local Supported Employment program, and currently works at a senior citizens home, leading the residents in Bingo games. In Rachel's life account, she positioned her own sense of identity in terms of being a 'helper', moving away from her former state of 'looking dumb' to gaining empowerment through learning to read and write, and through assisting other participants at self advocacy meetings. At one meeting, the group decided to send a thank you card to a speaker from a regional meeting. Rachel walked around the meeting tables behind the other participants, pausing to help several members to write their names. One of the advisors said 'she knows who to help'. When she gets to George, a man with cerebral palsy, she places her hand upon his, helping him hold the pen and print his name (the hand-over-hand approach was also used by myself and Rachel's friend Reba in our interactions with George). Bonnie
The importance of relative independence carried over into other areas of her life, as Bonnie repeatedly stressed the importance of independent decision making as a sign of adulthood. For example, she mentioned that adulthood meant 'the right to have children'. This is particularly significant, as a key issue for discussion at self advocacy group meetings was the history of forced sterilization for persons with disabilities in Canada. Adulthood for Bonnie also meant social integration.
For Bonnie, adulthood began when she moved out of her family home.
She felt that adulthood was also a time to overcome the limitations of her own childhood by providing children with resources that she never had.
James
For James, as for other respondents, a sense of independence and social
integration overlap in the emphasis placed on 'going places on my own',
such as hockey games and the local shopping mall. James took particular
pride in having his own basement apartment, secured through the housing
program of a local disability service provider. "Living by myself
is very important, having my own place." Jessica
For Jessica, adulthood meant being given respect as a mature person who could make her own decisions. In turn, respect contributed to her own sense of self confidence, something that she did not experience as a child.
Sharing the sentiment of other respondents, Jessica described the importance of having 'her own place', an apartment shared with two other people. Selection of housemates was based on mutual friendship, rather than institutional placement. However, in moving to this new apartment, staff at Jessica's supporting agency had been reluctant to grant her the respect and independence that she desired. Jessica recalled some of the resistance she had experienced:
In sharing her apartment with friends, and in receiving some services from her supporting agency, adulthood for Jessica was a status of relative self sufficiency, not of absolute individualism. Carl
However, while Carl's mother was proud of her son and his achievements, she was reluctant to grant him respect as an adult. She focused on Carl's status as her child to the point of neglecting his status as an adult who could speak for himself, and at several points in our interview she addressed Carl as if he were a young child. Through the accounts presented above, I have indicated the significance for my respondents of claiming the status of adulthood. Thoughts of childhood were often marred by memories of institutionalization, discrimination and control. In contrast, adulthood was characterized in terms of empowerment through the gaining of relative independence, social integration, and personal respect. Testament to the significance of adult status was the resistance demonstrated by these individuals and other self-advocates to Ontario provincial policy of the late 1990s that promised to amalgamate services for children and for adults. Making services work for people Within the province of Ontario, pressure from self advocacy organizations and a shift in the provision of services to adults led to the primary provincial disability service provider changing its name, in 1965, from the Ontario Association for Retarded Children to the Ontario Association for the Mentally Retarded. Although the movement towards community living within this province has been cloaked in the rhetoric of respect and dignity, disability self advocates have recently identified the threat of a provincial policy initiative to combine children's and adult services. In April 1997, the provincial Ministry of Community and Social Services released its policy document Making Services Work for People: A new framework for children and for people with developmental disabilities (MSWP). Children and people with learning disabilities are presented as subjects for crucial areas of reform, 'for it is children and those with developmental disabilities who are most vulnerable and least able to express their needs themselves' (Ministry of Community and Social Services, 1997, pi). For the purposes of this article, it is important to recognize both the association between children and persons with disabilities, and the juxtaposition of the needy/vulnerable/non verbal/disabled/individual with the autonomous/verbal/ independent/individual. Presenting a disjuncture between the growing needs of children and persons with disabilities, and a scarcity of government resources, the document calls for a new framework of services to increase system efficiency while maintaining and improving service quality. The vision statement for these changes, as presented in the Ministry's Business Plan, reads:
As one aspect of these changes, the Ministry emphasizes a shift from government responsibility to increased community accountability for persons with disabilities. The rhetoric of 'community', the 'local' and 'family' (as opposed to state) and 'shared responsibility' (as opposed to state control) for the 'vulnerable'/'those most in need', fits well with the over-arching theme of then premier Harris' 'common sense revolution', and seems to answer the concerns of disability advocates and self-advocates for person centered planning and individualized funding for persons with disabilities. The Ministry introduces MSWP as representing four shifts in policy direction:
The goals, as presented in the policy document, are as follows:
System features to be implemented towards these ends include: coordinated information mechanisms, centralization of access points, case resolution function, a single point of access for some residential services and supports, integrated or coordinated assessments, single agreement for services, reduced costs of administration. More specifically, these plans call for the development of regional access and assessment centers, similar to the recent developments in long term care for the elderly (43 access centers), through which concerns and needs relating both to children and disabled adults will be addressed. While the Minister in charge has denied rumors of amalgamation between
these two service sectors, the Corporate Review Report from the Hamilton
Area office suggests otherwise: 'criticism is expected from some stakeholder
groups (particularly from the developmental services sector) regarding
the creation of a single children's services/developmental service systems
approach' (MCSS 1998, p3). Response from self advocates: reclaiming adulthood
At one PFO board meeting, executive members agreed to work with the Ontario Association for Community Living, a key provincial service provider, on key issues emerging from the government's proposals, including the amalgamation of children's and adult services. While several of people found it difficult to say much about the recent policies when questioned during interviews, a general consensus had emerged that PFO would resist the proposed amalgamation, as the combined focus on children's and adult services presented a return to the institutional experience of 'being watched' like criminals or children, invading the individual's privacy and sense of control over self and body. In May 1997, the president of PFO sent a letter to the Director of the Developmental Services Branch for the Ministry in Toronto, asking him to cancel the initiative, as:
One of the most common remarks by self advocates concerned the assertion of adulthood for persons with disabilities. During one meeting, an advisor to PFW tried to explain the intent behind MSWP.
At this point, another member named Chris joined in the conversation. Chris' statements draw on local examples to help explain the discussion, using the local Association office as an example.
Jaclyn added that if people were treated like children, the government might also disregard their rights as 'real' adults. As Bonnie said
The concern over being treated as children appears in contrast to a strengthening disability oriented family movement in Ontario. One of these organizations, the Family Alliance of Ontario, organizes an annual march on the seat of the provincial government in Ontario, which has in recent years focused on Making Services Work for People. I attended the 1998 protest, as did Mary, George and Jaclyn. Protestors carried signs reading 'Our Kids Can't Speak for Themselves' and 'Keep Our Families Together', and parents spoke out as advocates for their disabled children. Although there was not much discussion amongst PF members regarding these organizations, the PFW advisors said that they were concerned about parent advocacy overshadowing self-advocacy efforts. The fear of infantilization was compounded by the association of children and adults with developmental disabilities as populations facing common problems of system access and vulnerability, and also by a perception that the policy was directed more at the children's sector than at the adult developmental sector. Conclusion
What remains clear in the perceptions of persons with learning disabilities and their advocates is that they have once again experienced discrimination, in the guise of policy which promises to facilitate service delivery but in the process to deny them the status and rights of adulthood.
References Davies, Charlotte Aull (1998) Constructing Other Selves: (in)competencies and the category of learning difficulties. In, Richard Jenkins (Ed.) Questions of Competence,. Cambridge: Cambridge University Press, pp102 124. Devlieger, Patrick J. (1998) (In)competence in America in comparative perspective. In, Richard Jenkins (Ed.) Questions of Competence,. Cambridge: Cambridge University Press, pp54 75. Dybwad, Gunnar (1998) From Eglantyne Jebb to Barbara Goode: A Historical Perspective on Human Rights for Persons with a Mental Handicap Entourage 11(2 3): 3 7. Ministry of Community and Social Services (1996) Business Plan. Toronto: Queen's Printer for Ontario. Ministry of Community and Social Services (1997) Making services work for people: a new framework for children and for people with developmental disabilities. Toronto: Queen's Printer for Ontario. Ministry of Community and Social Services (1998) Making Services Work for People. Hamilton's Best Advice. Report of the Hamilton Advisory Panel to the Hamilton Area Office. |
Disability Studies Quarterly (DSQ) is the journal of the Society for Disability Studies (SDS). It is a multidisciplinary and international journal of interest to social scientists, scholars in the humanities and arts, disability rights advocates, and others concerned with the issues of people with disabilities. It represents the full range of methods, epistemologies, perspectives, and content that the field of disability studies embraces. DSQ is committed to developing theoretical and practical knowledge about disability and to promoting the full and equal participation of persons with disabilities in society. (ISSN: 1041-5718; eISSN: 2159-8371)