Wednesday, May 27, 2009

Assuming the right of way

It is clear who has the right of way in Indonesia. Rather than providing walkways that are safe, the Indonesian Parliament voted that disabled pedestrians must wear signs identifying themselves as "handicapped". The rhetoric is that it's for the protection of disabled people, although opponents point out that it's really to benefit cars and drivers, putting them first rather than fixing the problem that there are no safe places for any pedestrians. However, the sign requirement only applies to those with disabilities.

We may think such a thing would never happen in the U.S., but the reality is that in our country, some disabled people aren't even out in the community, but in nursing homes.* Advocates who work toward community care and support the Community Choice Act know that the opposition to it is, in part, because the nursing home industry stands to lose the population of young disabled "patients" and the income derived from this group.

The human cost of dehumanizing treatment often gets lost in the equation when powerful groups with an upper hand in negotiations are given the right of way.

Wear a sign so those who are driving can see you. Live in an institution even though it costs more because it keeps the monies flowing and maintains the status quo.

Can you imagine the outcry if any other population receiving government funding had an institutional bias? What if someone decided that all children in government funded child care must be institutionalized 24/7? What if small business owners receiving government grants had to live in special housing? After all, they're taking government funds. This would seem like a gross exaggeration to many, but in effect, an institutional bias attached to government funds is only tolerated for those with disabilities. There is no reason that people with disabilities cannot live in the community with home care and be active participants.

Our society still has skewed values toward the disabled, many of which are being challenged by advocates. We provide IEP programs for students with disabilities, but our federal government has dismal employment figures for those same students after they get their education. We fail to build accessible homes for purchase, and continue to tolerate discrimination in rentals. Businesses still have to be sued to provide access inside, even national chains that can well afford to do so. Restaurants illegally bar those with guide dogs from entering. Airlines have refused to allow passengers with disabilities to board alone or at all. Advocates are working tirelessly to change these things on a daily basis, simply because waiting around for change has not worked.

Some people in our country, whether disabled or nondisabled, by virtue of circumstances, may already live in a world where they are privileged to have housing, employment and transportation, access to their community for material and spiritual needs. They may argue that Indonesia is far away and what happens there has no relevance to what takes place in our country. Some, in fact, even maintain that advocating isn't necessary. Of course, they already have the right of way.

But if you already have the right of way, I suggest that you pause and consider whether others who don't, who may not be as fortunate, deserve the same things you take for granted. Because what I see happening is that we are still handling disability issues and concerns through labeling and segregation rather than addressing the underlying problems.

And those who are most affected in our country have been without a voice at all.

*The nursing home industry argues that the bias for institutionalized care should remain in Medicaid. The reality is that the nursing home industry has a vested financial interest in maintaining the status quo.


FridaWrites said...

As a 6-year advocate for CCA (in action, not just thought), I am shocked that the bills for it have not yet passed, that they come up again and again. The same happened with some bills for breast cancer advocacy in the late '90s. It had not occurred to me the nursing home administrators might be fighting this too.

If I was not married and did not have support from others, I wonder what would happen to me on my worst weeks (like the past two weeks)--whether my doctors would believe, and whether I'd be able to get a very minimum of personal assistance that I need (help with bathing, grocery shopping, preparing some meals, some household tasks). I could not be up long enough to microwave some food last week--my kids can do that under necessity but not for the long term.

FridaWrites said...

And it's just disturbing about Indonesia--kind of Holocaust-y. Can't imagine the stigma that's going to result.

Wheelie Catholic said...

This is the kind of issue for the disability community (and everyone, actually) that intersects with aging - home care. We all need to be aware, even if we may not need it now, that it could change for us, as you point out.

Yes, it will definitely result in even more stigma. So backward.