The better question is what isn't independent living? It's morphed in a frightening direction from its foundational philosophical tenets of control, choice, advocacy, peer support, and cross-disability to a generic slogan that implies Independence. Assisted Living companies call their products Independent Living even though there's virtually no control, choice, or even the ability to advocate for change. This is true for healthcare, housing, human services, and on and on.
People with disabilities are losing our identity and control in order to qualify for the basic services necessary for community living. Medicaid, the biggest source of healthcare and long term services and supports for people with disabilities has become so ”medicalized” that it forces us into patient roles where clinicians make eligibility decisions and policymakers that are constantly looking to make cuts in programs to save money under the guise of managed-care and continue to roll back services by changing financial eligibility, imposing spending caps, and using algorithms to cut back on service hours.
We are forever in debt literally and figuratively to the government for our existence. We’re constantly fighting just to live outside of a nursing home or an institution. It’s never-ending and rigged to keep us in poverty which, of course, is the solution. If it were easy for us to get jobs we wouldn't be poor and wouldn’t need to rely so heavily on these very programs that are stealing our freedom and human rights. So, what’s the problem? Federal and state government is; from archaic laws and eligibility criteria to misguided policies especially with regard to employment. We have so many disincentives to work that it's just easier and more necessary to stay home and do nothing. In order to have a poverty-level income, we have to take a vow to not work. If you go to work, you lose it all for the most part. It truly is a cycle of poverty that goes from generation to generation.
It comes down to jobs and building wealth. To rise up out of poverty is practically impossible if you have a significant disability. We should be focused on jobs and fight to level the playing field to employment. There's no reason why we have to perpetuate poverty for another generation. It's our time to stop it now! The time to get back to the basic fundamentals of Independent Living is now. As a movement, we have power; we’ve used it time and time again. We came together to force the implementation of 504, we used it to get the ADA passed, we used it to stop segregated housing and employment and we must use it to finally unravel the myriad of policies that keep us from working and receiving long-term services and supports we need to live independently at the same time. Income from working must not continue to disqualify us for long-term services and supports.
I think disability rights advocates know what the problems are, but we haven't been able to come together to solve them. We can’t afford to wait for a better time. There is no better time. Independent Living has to be the unifying force that pulls us together for another exercise of our collective power; to break the back of poverty and finally realize true freedom.
This is what Independent Living is.