Family member of a person with disability
“• Disability advocacy ensures that views represented meet the individual
preferences, goals and needs of people with disability.”
My focus is on the above statement. It is one that has been found lacking in formal advocacy organisations, particularly those funded for Systemic Advocacy. Our son is now 33, over that time we have joined a number of advocacy organisations. Generally they have adhered to an “ideological” approach that made them part of the problem rather than part of the solution.
The only acceptable ideology is one that places the demonstrable needs of the person with the disability foremost. The ludicrous notion that inclusion in the community will “cure” whatever ails a disabled person has been used by Governments in Australia as an excuse to remove services and to remove Government from the direct provision of services. “Deinstitutionalization” left the most in need in the care of Non-Government agencies that simply could not cope. Institutions have been clearly shown to work once the families of the disabled became an empowered part of the management. Indeed I suspect that any service provider requires an empowered Parents Advisory Group within the hierarchy. There is no substitute for empowered supervision by the families of “clients”.
The concept that the genuinely disabled care about “inclusion” in the community is suspect. What they want is to have their needs met. The framework needs to cater to the wants of the disabled not their needs as expressed by various academics and this pertains as much to the wording. The concept of economic inclusion is meaningless in a world where the able are unemployable. It is about the need to be happy nothing more. The imposition of values that are important to people who are able is at best a sop to our conscience and must be avoided in such a document. They distract from what is important, the meeting of the real needs and wants of the disabled.
The idea that systemic advocacy must be tied to individual advocacy is essential but unfortunately is seldom the case. The “ideology” behind any such group needs to be examined before anyone is funded. As I have said: The only acceptable ideology is one that places the demonstrable needs of the person with the disability foremost.
Unfortunately most service organisations are currently run by people whose ability to deliver services is limited by their own concepts of morality. When that is the case the organisation should not exist.
Bluntly the need for sexual “inclusion” must be addressed in this document, I know that is difficult but it is too important to ignore such a basic human need. It is apparently impossible for some religion based organizations to cater for sexual needs or even to admit to the normal human diversity in sexual needs. The lowering of sexual desires is intrinsic in Chemical Restraint, something that must be addressed. The disabled attract all manner of predators and many, probably most have suffered abuse because of it. From a parents perspective the topic must not be ignored.
Please have the courage to express this document in plain english without Political Correctness, the disabled amongst us deserve no less.