In the last two decades, tremendous strides have been made for disability rights, particularly in the area of forced institutionalization. Thanks to legislation and case law, the government has taken a firm stance on the issue, and increasingly, disabled people are free to live in their communities where they belong. In addition, many states are dismantling their institutions and relocating disabled people to group homes and other alternative settings, in keeping with changing attitudes about whether it’s acceptable to house people in institutions. Not everyone, however, is in favor of this, and some disabled people who want to stay in institutions feel like their voices are going unheard.
Institutionalization is an incredibly complex issue, and historically, the voices of those who want to be free has been silenced. Has the scale been tipped the other way in an eagerness to create the sense of a unified movement against institution? Outliers are still human beings and their needs and desires should be respected, especially when it comes to an issue as critical as housing, where you live, and who you live with. Can the wishes of those who prefer institutional settings be kept in mind while shifting overall social treatment of disabled people?
The shift to institutions began in the late 19th century, when disabled people began to be pushed into institutional settings rather than being allowed to live in their communities. While community-based life was often imperfect (disabled people could be hidden and considered the shame of the family), it provided opportunities for personalized care in intimate environments. In institutionas, people were warehoused in filthy, unhealthy conditions that often shortened their lives as well as limiting their ability to manage their disabilities effectively. People with intellectual disabilities, for example, who might have benefited from therapy and rehabilitation, instead regressed, struggling to complete tasks of daily living, communicate and establish connections with other people.
Into the 20th century, many institutions were horrendous, and it was only through extensive work that communities began pushing for better care in institutional settings, including better pay for workers, more hygienic conditions and more opportunities for therapy, support and enrichment. Rather than being a warehouse for unwanted human beings, the ideal institution became a place for people to live as part of a community — though human rights violations and other horrors still persisted.
Disability rights advocates pushing for more independence and a place in society pointed out that while institutional life could be improved, it wasn’t the same as living freely in society, and it could be substantially more expensive, too. They were joined by other campaigners to create a growing deinstitutionalization movement that, in many states, has resulted in referring disabled people who need supportive care to group homes and other supported living situations.
In addition, many institutions are closing and relocating their residents. For some, this may come as a welcome change, or a neutral one, but others are happy, confident, and comfortable in their homes. They may have spent years being shifted around the system, and they enjoy the routine, friendships and familiarity of the institution. They’re asking, quite reasonably, why they’re being kicked out and placed in group homes while long wait lists of disabled people who want spaces in group homes aren’t addressed.
Wendy English, a woman with cerebral palsy living in an institution, is one of those people. She’s worried that the State of New Jersey is endangering her by pushing her into a group home placement she doesn’t want, and she points out that the staff at the institution she calls home know her and are familiar with her needs. In a group home, she’s afraid she would languish, and she’s particularly concerned about how attendants will handle her depression. She’s also concerned about the health risks associated with her limited mobility and poor muscle control — she has difficulty swallowing, for example, and could choke if left unattended.
Like other disability advocates, she’s wondering if in the push to deinstitutionalize, states are moving too fast. While group homes and community placements can be an excellent setting for many disabled people, that isn’t the case if states are staffing them with untrained, poorly-paid workers who can’t commit to providing a high standard of care to residents, and to staying on staff for an extended period of time so residents can get to know them. In this case, the very legitimate desire to get disabled people out of bad situations may, tragically, be landing some in bad situations at group homes where abuse and neglect are very real concerns.
For Wendy, the options are narrowing, and she’s been forced to make a choice she didn’t want to make in the first place. She’s nervous about her new group home placement, but, like so many disabled people, she’s at the mercy of the government.
Photo credit: Ed Schipul.