Tag Archives: institutionalisation

Florida Court Ruling: Community-based Services, Not Institutionalisation

autonomy, events, justice, policy, politics, , ,

In 2007, Florida resident Michele Haddad was involved in a motorcycle accident with a drunk driver. She incurred a spinal cord injury that led to quadriplegia, and lived at home until she lost her caregiver and Medicaid informed her that she would only qualify for the services she needed if she spent 60 days in an institution. Aside from making absolutely no sense, as often seems to be the case with Medicaid bureaucracy, this barrier to accessing care was also highly discriminatory.

Haddad sued, arguing that she would suffer ‘irreparable harm‘ by being compelled to enter a nursing home, and the court agreed. The State of Florida was ordered to provide her with the community-based services she requested and was entitled to. Haddad will be getting a caregiver and staying at home, and we can chalk down another victory for disability rights. This is huge and I am really pleased by the positive outcome in this case. Haddad wanted to stay at home, she should have been allowed to stay at home, and it is heartening to read that the court ruled on the side of justice, bodily autonomy, and independence in this case.

The United States Government was also involved in the case, arguing on Haddad’s side. The Justice Department is currently fighting several discrimination cases, many of which build on the landmark Olmstead vs L. C. case that cleared the courts 11 years ago. Speaking about the Haddad case, Thomas E. Perez, Assistant Attorney General for the Civil Rights Division, said:

In the Olmstead case, the court recognized that the unnecessary segregation of individuals with disabilities stigmatizes those individuals as unworthy of participation in community life. By supporting Ms. Haddad in this case, we seek to ensure that individuals with disabilities can receive services in the most integrated setting appropriate, where they can participate in their communities, interact with individuals who do not have disabilities, and make their own day to day choices. (source)

I’m excited to learn that the Department of Justice is cracking down on discrimination and is specifically selecting cases that will promote full integration into society for people with disabilities. As I discussed a few weeks ago, passing antidiscrimination laws and winning victories in court isn’t enough to put a stop to discrimination and ableism, or to the social attitudes that allow for the dehumanisation and abuse of people with disabilities, but these cases do make a difference, and the direct involvement of the government shows that there is a genuine desire to address disability discrimination and to fight it.

Forced institutionalisation, as almost happened to Michele Haddad, has a long and very sordid history in this country. A common problem that I encounter in discussions about it is that it is not always recognised as such. The Haddad case seems fairly clear-cut: She clearly stated that she wanted to stay at home and she was told that she would lose services if she didn’t enter an institution. That sounds forced to me, and it sounded forced to the court, and most of the people discussing the case seem to agree.

But other cases are less clear. A lot of people with disabilities are not provided with information they could use to make choices independently. They are pressured by family members or care providers. Someone in a situation similar to Haddad’s might not be aware that home care was an option. All it would take is being whisked into an institution from the time of an accident and deprived of access to information suggesting that there are alternate modes of care. We see the same thing with decisions about medical care, where people aren’t provided with information and options, but simply told what to do.

‘Forced’ is a slippery word and it is not uncommon for people who want to deny that forced institutionalisation happens to find ways to weasel out of confronting it. After all, if you don’t say the word, it’s not happening, right? This persistent denial is one of the things that makes it so difficult for us to confront the real-world consequences of ableism. If we can’t get people to talk about the fact that forced institutionalisation happens, we can’t get people to talk about why it happens and we can’t get people to fight it.

Forced institutionalisation is not the only denial of rights and autonomy to people with disabilities that people think of as a thing of the past and believe doesn’t need to be addressed, countered, or fought any more. As a result, when we attempt to have conversations about these very real, very structural, and very present issues, we meet rhetoric like ‘oh, well, that doesn’t happen anymore, right? It sure was sad when it did, though.’

Michele Haddad, and thousands of people with disabilities all over the world, can personally testify that forced institutionalisation is not a thing of the past; here in California, for example, disabled activists are currently protesting cuts to In Home Support Services, a program that is vital for people receiving home care. Those funding cuts will result in institutionalisation for people currently receiving IHSS services.

Who Is The Victim Here?

sexual assault, social attitudes, violence, ,

Content warning: This post contains discussions of physical abuse and sexual assault perpetrated by caregivers.

Last week, I read a horrific story in the Los Angeles Times about an employee of a retirement home who was sentenced to life in prison for torturing the residents. The story in the Times describes patients as ‘dementia ridden’ and ‘wheelchair bound,’ dehumanising them for readers and putting the focus squarely on friends and family. It’s not awful that this man kicked patients, punched them in the stomach, body slammed them, sexually assaulted them. It’s awful that he got caught and that their families know. The defense? That the accusations came from employees who ‘committed similar abuse themselves.’

This man was named ’employee of the month.’ A medical examiner described the injuries to the body of one of his victims as like ‘being hit by a train.’

“Society is judged by how we care for people who can’t care for themselves,” Herscovitz said. “What could be worse than to have someone abused and not be able to communicate, to be trapped in their own body… and endure the abuse?” (source)

Again, the focus here is not on what happened to the victims, but what the abuse says about society and the perpetrator and the families of the victims. On the guilt experienced by family members who placed their loved ones in the facility. I see a parallel between the language used in these articles and the rhetoric from animal rights organisations like The Fund For Animals, which ‘speaks for those who can’t.’ It’s a pretty stark example of how people with disabilities are viewed by society.

This is not the only report of a ‘caregiver’ abusing people that has showed up in the news lately. In Santa Barbara, a man who sexually assaulted a disabled woman recently reached a plea bargain. Another graphic rape case from El Monte, California. In Des Moines, a disabled woman was raped by a ‘caregiver’ and her rape resulted in a pregnancy; the case would have gone undiscovered if it were not for that.

There is a consistent theme in the way that stories like this are reported. I wrote recently about how rapes of disabled women are framed as a crime against society, not the victim, and the same holds true for abuse. I get the impression, from the way that these articles are written, that the problem isn’t that human beings were tortured, sexually assaulted, and abused, but that ‘the helpless’ were subjected to cruelty and this reflects poorly on society.

It reflects poorly on society that we consider people with disabilities to be helpless. It reflects poorly on society that these narratives reinforce the idea that people with disabilities are incapable of protecting themselves and cannot report crimes committed against them, because this tells people who commit crimes like this that as long as they don’t get caught, they can act with impunity. The dehumanisation of these victims focuses on how awful it must be for their family members, how terrible it must be for them. Not on how awful it is to be a victim of violence.

Sometimes, I read stories where it seems to be implied that the victim doesn’t really understand, so the real source of heartbreak and tragedy is the knowledge of the family members. Never do these stories mention cases where people are not provided with the tools to communicate what is happening to them. Never do these stories talk about situations when people have reported abuse and have been ignored. Surely both of these things reflect poorly on society, don’t they? Why aren’t we talking about them?

These stories do not explore the structural problems involved. They do not talk, for example, about what it is like to be dependent financially and physically on someone who  is abusive. On what it is like to know that reporting could end in retribution, institutionalisation, or even a return to the abusive caregiver. They don’t talk about the creation of enforced dependence, or why it is so hard to report abuse. Why it is that inmates of institutions can report abuse and nothing happens, but when their family members get involved, sometimes action is taken.

These stories are also presented in a way that suggests these cases are unusual. They are abhorrent, but they are not unusual. I wish that they were unusual, that caregivers who abuse were so extraordinary that such stories were blazoned across the major networks on the evening news. Unfortunately, this is not the case. Indeed, a quick perusal of Google News turned up a stack of cases from the last week documenting abuse perpetrated by caregivers. Some of these cases were so awful that I couldn’t bring myself to link to them, even with a warning.

People wonder why people with disabilities don’t universally trust caregivers, have concerns about institutionalisation, why sites like this one that centre the voices and experiences of people with disabilities exist. It’s because these kinds of cases are far from being uncommon, and because in most places, the myth that facilities that warehouse people with disabilities provide ‘care’ is alive and well.

As long as these stories keep being reported like they are unusual, as long as they keep dehumanising victims, the social attitudes that contribute to the abuse of people with disabilities will continue.