Disability Rights Vs. Workers Rights: A Different Perspective


The disability rights movement frequently uses civil and human rights analogies to bolster our argument that people with disabilities are battling similar power systems that have historically blocked the equal participation of women, people of color and gay/lesbians.

One area that has been ignored in most of the country has been the relationship of the worker rights/union movement to the disabled community’s struggle to fight unnecessary institutionalization and live in the community.

Few disability organizations and fewer people with disabilities belong to, interact with or have any understanding of the labor movement in this country. Many disabled people, when asked, will express a close relationship with their attendant. They want their attendant to be paid well. Good wages and benefits means less turn over and quality. However, it is very unlikely that this relationship is seen in the context of worker rights and the right of unions to organize.

The fight to stop the rebuilding of Laguna Honda, the nation’s largest nursing home, brought this little discussed issue to the forefront. It made “progressive” disability advocates as well as union members take positions that made both feel uncomfortable. What was the position of the union movement in relation to a disabled persons’ “right” to live and receive services in the community became a question asked around the country?

Union spokespersons talked about “our safety” and that “these people” needed to be institutionalized. Disability advocates talked about SEIU being “jailers” concerned only about money and not the civil rights of the people locked away in Laguna Honda.

The irony of the debate was that SEIU was also organizing home workers and the Public Authority concept in Northern California was becoming for the union a possible model for future organizing.

Why had this not been debated before? In fact it has. The union that had been at core of the debate is not SEIU but the American Federation of State County Municipal Employees (AFSCME).

Historically the fight for de-institutionalization has focused around people with cognitive/mental disabilities warehoused in publicly funded State Institutions. The public service workers in these institutions were relatively well paid with benefits. Public employee unions all over the country have fought against and in many states have succeeded in stopping or slowing down any movement to close or down size these facilities. The assumption has been that community service jobs are low pay with no benefits.

The de-institutionalization that has occurred over the last 30 years has been from large facilities to smaller facilities or group homes. It has been relatively recent that the community service system is focusing in on an individual needing a personal attendant in their own home (Consumer control/Self determination).

The Supreme Court’s Olmstead decision broadened the de-institutionalization arena to include folks in nursing homes and other institutions. It also gave new impetus for aggressive advocacy to fight unnecessary institutionalization.

The independent living /self determination model of personal attendant services has defined “consumer control” only as give me the money and I will hire my own attendant challenged those in the union movement to figure out how they could organize these community workers without making each person with a disability a bargaining entity. The California solution was Public Authorities which act as bargaining agents but allow the individual to exert consumer control.

The questions that need to be answered are:

1. Are there other models other than Public Authorities that will allow unions to organize but give the individual consumer control/self determination?

2. Are community service personal attendant jobs inherently low pay/no benefit occupations? Can we work together to advocate for good paying jobs with benefits in the community in a conservative environment?

3. Can the definition of consumer control/self determination be expanded to allow “Agencies with Choice” that allow the individual to select,manage and dismiss their personal attendant?

4. Will the unions work cooperatively with the disability community to educate each other on their constituencies needs and develop consumer control/self determination models that address worker rights, wages and benefits?

There are no simple solutions. We must negotiate at the table as equals with all the unions.

SEIU has endorsed MiCASSA and is attempting to organize home care workers all over the country. We must support their efforts but not give up our principles.

AFSCME on the other hand has a long way to go. The leadership of AFSCME are old time union activists. The disability community must confront AFSCME directly. Let’s work together for good wages and benefits in the community.

The AFL-CIO must take a leadership role in this transition from institutions to the community. Endorsement of MiCASSA and promoting Community First! principles would go a long way in changing our long term care system that for too long has institutionalized us against our will.

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