By CHANDAR S. SUNDARAM

Picture with the word advocate underlined

In our atmosphere of inclusion and respect for all sectors of the population of our province, one community continues to be marginalized. That community is persons with disabilities.

Except in the field of para-sports — the Rick Hansens and Michelle Stilwells — we never seem to hear about persons with disabilities. Yet, there are thousands of persons with disabilities in this province, and they are people with much the same dreams, aspirations, and desires for dignity as the abled majority.

The idea of disability advocacy does not reinvent the wheel, as B.C. already has advocates for children and youth, and seniors.

Yet, for us persons with disabilities, there are challenges that act against us reaching our true potential. Regrettably, my lifetime experience — I have been disabled almost since birth, the result of a childhood stroke — and my experience as a peer supporter with the Victoria Brain Injury Society have made me acutely aware that having a disability means to be stigmatized.

It is for this reason that we need a disability advocate. The disability advocate should be an office independent of government and political parties, a sort of watchdog agency, accountable only to the disabled.

The disability advocate would:

  • Closely scrutinize the proposed disability act with an eye towards: a) ensuring that what it lays down helps people with disabilities in tangible ways, instead of being just one more toothless government initiative, and b) ensuring that it is written in a transparent, comprehensible fashion. This would promote the government initiative to enhance access, through citizen engagement, open data, and open information.
  • Formulate and implement a disabled persons’ bill of rights, stressing dignity and inclusion.
  • Streamline, simplify, and clarify the process for applying for persons-with-disabilities benefits, again based on the government’s enhancing-access initiative. Remember: What is clear to bureaucrats is usually unclear to the disabled public, who are, after all, the end-users.
  • Institute a disability helpline to aid persons with disabilities in overcoming difficulties in obtaining relevant services. Through this, the disability advocate would be able to identify problem areas, and work toward reallocating services and resources to ameliorate these difficulties.
  • Work with the ministry of social development and poverty reduction to develop an updatable database of persons with disabilities in B.C., if one does not already exist. This would help immensely in the efficient delivery of services.
  • De-link persons-with-disabilities benefits from income-assistance benefits. The communities involved are an odd fit, with different needs and aims. Linking the two seems to arise out of bureaucratic expediency rather than end-user convenience.
  • Work toward increasing the availability of low-cost housing for persons with disabilities.
  • Work towards the indexing of PWD benefits to at least a cost of living above the poverty level – based on basic shelter and food needs. It is scandalous that B.C., with the highest living costs in the country, has among the lowest income-assistance and persons-with-disabilities allowance rates.
  • Promote a greater sensitivity to, and knowledge of, disability health issues among provincial health authorities and frontline medical caregivers — MDs and RNs.
  • Work to revise upward the inadequate number of GPs, and also effect a more liberal scheme for medical consultation, which, as it stands, is bureaucrat-centred rather than patient-centred. This would have significant implications for the abled majority as well.
  • Promote awareness of disability issues among the abled public through public campaigns. For example: a) a walk-a-mile-in-our-shoes type challenge, issued for abled people to try to function for 48 hours with their good hand tied behind their back; b) a disabled week, where activities, parties, etc. are held, modelled after pride week; c) a weekly newspaper and/or radio column on disability issues. The purpose of this publicity will be to combat the social stigma often foisted upon people with disabilities. We are disabled, not stupid.

Finally, the disability advocate would work toward the integration of disability issues. Disability issues should not be “siloed” into the ministry of social development and poverty reduction.

Silos might be all right for grain, but people need a holistic integrated approach.

To paraphrase the metaphysical poet John Donne: “No person is an island.” Beside the above-mentioned ministry, I propose a co-operative approach to tackling disability issues that should include the ministries of education, health, municipal affairs and housing, and labour and finance.

This approach would also co-ordinate efforts with the non-profit disability-organization sector, because there is strength in numbers, as well as co-operation and inclusiveness.

 

Chandar S. Sundaram is a Victoria-based historian, teacher and author. He had a stroke in early infancy.

 

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