1. Introduction

1It should go without saying that disabled people, no less than anyone, deserve fulfilling and flourishing lives with the opportunities and means to allow their capacities to develop, and to have their dreams nurtured. Essential to this goal is the endeavor to have people with disabilities integrated into their community and included in its activities.

2The group of disabled people for whom these visions have only been scarcely realized are those with intellectual and developmental disabilities. The obstacles which the impairments themselves pose require that we abandon preconceptions and use creativity in “normalizing” (in the terminology of Wolf Wolfersberger (1972) people with intellectual disabilities.

3One key feature is the question of where these individuals should live1. The present view of some disability activists and self-advocates is that all should live ‘in the community,’ regardless of their needs and conditions2. Others argue that some residential facilities should exist for those who desire it and who need extensive care3. Proponents of this view do not want to call such residences “institutions”. There is a long, ugly history of isolated residential facilities, which Goffman (1961) called “total institutions”. Those who maintain that we do need such residential options do not conceive of these facilities as “institutions” and those who reside there as people who are “institutionalized”. Those opposing any kind of congregate living insist that they are still institutions—just prettied up—and still present the same obstacles to the full inclusion and integration of all disabled people into so-called normal society.

4I want to wade into this debate, not with authoritative facts and figures but from the point of view of one mother of such a disabled daughter, and with thoughts about total institutions, inclusion, and community.

2. A Personal Journey

5In 2000, my daughter Sesha was 26 years old. Sesha is a wonderful, beautiful, and (when she is well) sparkling woman, now 53 years old, who has multiple disabilities, intractable seizures, and medical frailties, both cognitive and physical. At home, she lived with me, her father, her brother, and a full-time caregiver who had been with her since she was 5 years old. At that time, I wrote the following:

It’s Sunday morning in my kitchen. Sesha, my daughter, is enjoying a breakfast of oatmeal and whole-grain toast covered with jam. Sesha is nearly 30 years-old (but looks like she’s fourteen). … She sits in her modified Quickie wheelchair, which serves as her own throne. … She understands some of what we say to her – and maybe a great deal more than we fathom – but not enough to be safe when not securely seated in her chair. When she’s well and enjoying her food, mealtimes are a pleasurable time. She insists on music while she dines… This morning, Sesha’s caretaker has prepared small pieces of the toast and jam for finger feeding – Sesha cannot use a spoon, fork, or knife effectively. She holds a piece of the toast and jam in her hand, and her mouth is a lovely raspberry red. I sneak up behind her and kiss the still-pristine cheek. Sesha, as always, is delighted to see me. Anxious to give me one of her distinctive kisses she tries to grab my hair to pull me to her mouth. Yet at same time my kisses tickle her and make her giggle too hard to concentrate on dropping the jam-covered toast before going after my hair. I negotiate, as best as I can, the sticky toast, the hair-pulling, and the raspberry-jam-covered mouth. In this charming dance, Sesha and I experience some of our most joyful moments—laughing, ducking, grabbing, kissing. It is a pleasure I would have been denied if Sesha were not home with us (2000).

6I go on to say:

Sesha is so much a part of our home, a part of our life, that over the now-nearly-thirty-years of her life, we have not been able to seriously consider placing her in residential care – although given Sesha’s profound disabilities, she would most likely be a candidate for care not in a community setting. Although we do not think of Sesha’s disability as a “blessing,” we are among the most fortunate families in this world. Our financial resources have made available the possibility of hiring truly remarkable persons who have helped us with Sesha’s daily care. … The beneficiary of keeping Sesha at home has not only been Sesha. We, her family, those who come to our home, meet her, and experience her as part of our daily life, as well as those persons in the community who have been in touch with her, all have learned something important about the variety of human possibility and about the best of human love (2000).

7I wrote these remarks for an article discussing the landmark Olmstead v. LC decision, handed down by the US Supreme Court in 19994. Olmstead held that “states are required to provide community-based services for people with disabilities who would otherwise be entitled to institutional services when: (a) such placement is appropriate; (b) the affected person does not oppose such treatment; and (c) the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of other individuals with disabilities”. Today the debate about where and how to house adults who have significant cognitive disabilities has been sharpened by a ruling from the Center for Medicaid Services, which in the US oversees the public health care insurance for those who are disabled or living in poverty. The new regulations require that adults with disabilities be housed in a home with no more than four people and that these homes be dispersed in communities (Editorial 2017).

8Because we had the financial means, we did not go through the bureaucratic hurdles of applying for the care services to which we were doubtless entitled under Olmstead, although we did make use of community-based services such as daycare facilities and the therapies on offer. Sadly, the day facilities for adults with disabilities as significant as Sesha’s, at that point, were very inadequate—poorly staffed, with few therapy sessions to help her with skills and language. We had tried one such place and we judged that it offered little benefit to our daughter. She was placed with a group of equally significantly disabled people. With little exaggeration, we could say that by the time the few staff managed to greet and remove the coats they arrived in, and to toilet the folks, it was time for lunch, then toileting and dressing for the bus. While others were being toileted or fed, the rest just sat around. It was truly depressing. So, we decided not to send her to the daycare but keep her home and arrange for home-based habilitation therapies. We took walks, worked with musical instruments, gave her as much music as possible, and found a few good therapists. But winters were long and snowy, and there were many weeks we could neither bring her to therapy sessions nor could the therapists come to us. She was increasingly deprived of the stimulation and activities we could offer her. As over time her care needs were increasing, her caregiver was aging. We supplemented our caregiver’s services with other people, sometimes students from a nearby college.

9After 30 years, her full-time caregiver was ready to retire. At this point, we needed to figure out what’s next. We aged, like most all parents of people with extensive cognitive disabilities, worried what would happen to our vulnerable children when we died. As we aged, the concern grew. Sesha had a loving brother, but I didn’t want my son to take the very extensive responsibility of the day-to-day care of Sesha—certainly not before he had raised a family of his own and developed the career he sought. It was then that we began to look at residential settings.

10I envisioned this not as something that was imminent but as something that would be available for her in the distant (or not-so-distant) future. I could not imagine my life without Sesha at home with us. In fact, all the exploration of residential care was made by my husband because I just couldn’t conceive of residential placement. I could not imagine Sesha in a small group home dependent on the few staff available.

11In time, we were introduced to a remarkable place called the Center for Discovery in upstate New York. It was run by a private nonprofit company. At the time, it had just over 200 residents whom the agency oversaw. They were housed in small group homes scattered about in two [at that time] towns in the county. The agency provided oversight, the additional staffing of therapists, and recreational facilities. It also ran day care centers for their staff and those in the community, whether or not they were disabled. The Center was in a rural location 100 miles from the New York suburb where we were living—much too far away for my taste. But the setting was indeed beautiful. It had a working biodynamic farm that most of residents participated in whatever way they could. The homes had single rooms for each resident that the resident and family would decorate however they wished. It allowed visitors anytime, night or day, and unannounced.

12Houses with very medically fragile folks had full time nurses. I had to visit several times to be convinced that Sesha could manage this arrangement and hopefully would thrive in it. At home she had one-on-one care. Here this would be lacking. At home we knew so much about how she communicated. Could staff learn this? At home, however, given her limitations, and the difficulty of bringing her places, she had not much contact with the community other than friends and relatives who came to visit.

13What convinced me that we made the right decision was the time I brought her into the house, and she looked at all the residents, taking note of their wheelchairs—after a short while, I said to her, “Sesha, you have friends now,” and she gave a quiet content smile. For the first time, I realized that in the last years, she had been bored at home. She quickly took to the hands-on caregivers and her roommates. She managed to make her needs known to these strangers. She’s had a much larger and more vibrant community than she had at home. The day facilities were cheerful, and the work undertaken was geared to have meaning and benefit for the residents. At the time, the residents in her and neighboring houses were making sachets of herbs. The residents would have the sensuous experience of working with scented herbs and would participate through special adaptive equipment. There are weekly outdoor concerts in the summertime—a favorite of my music-loving daughter. She gets to interact not only with her housemates but with other residents. She has had expert therapists whom she sees regularly who keep her limbs mobile and who work on communication. I have learned through the years that she and other residents interact on a level most of the rest of us hardly understand. The residents care about each other. They worry when one goes to the hospital. Among some, I would say, there is love.

14Still, without Sesha, our house was no longer a home. We built a house near to the Center so we could have her home for weekends. The transition may have been more painful for us than for her. I think that she might have been happy to be “on her own”—even if that was heavily supervised at the residence. At least she was able to have the distance from her parents that most young adults crave.

15I have gone on at length about our decision with respect to residential care for Sesha because I want to point out several things garnered from our experience. First, a young woman of 30 needs more than just mom, dad, and an additional caregiver. She needs friends and activities. Although none of six residents at her home walk or talk, and most cannot even reach out to touch each other, there clearly is communication and affection between them. I have many anecdotes illustrating this. Second, Sesha really does feel that she has with her friends not only in her house but also those in her larger day program. Third, the day facilities available to someone with my daughter’s disabilities are generally very inadequate. And it is almost ludicrous to expect that she could “work” in an integrated setting. She does not have much control over her hands, and she lacks any standard means of communication—even though she understands a great deal and has a lot of receptive language. But communication devices have failed her so far. We finally have devised a communication system using a high-tech method, that is, two hands— two hands each representing a different response to a question we pose to her. At the time she moved to the Center, we didn’t even have that. With this crude means, I have only recently begun to learn about my daughter—about just how much she understands, and how she clearly has opinions and preferences of her own.

3. Total Institutions

16Let me say clearly and forcefully, I do not consider a place such as my daughter’s an “Institution”—the sort of place from which one should remove people to de-Institutionalize them. Erving Goffman has the definite word on institutions, on total institutions:

“A total institution may be defined as a place of residence and work where a large number of like-situated individuals, cut off from the wider society for an appreciable period of time, together lead an enclosed, formally administered round of life” (1961, 2).

17By this definition, there are all sorts of total institutions that are entirely benign and even desirable: summer camps, college campuses, and retreats for writers and artists, to mention but a few. These are temporary and chosen. Even monasteries, while voluntarily entered into, involve life-long commitments for communal and highly regulated living. Whether permanent or transient, none of these are places we think need to be liberated. Goffman notes one class of total institutions that are intended to be curative—asylums for the mentally ill—but fail to be benign because of the tendencies that take place in such institutions. These asylums have largely failed their residents. However, when we are speaking of people with psychiatric disabilities, we need to admit that deinstitutionalization has also failed them. They have left the asylums to live on the streets and in prisons.

18Aggregate living facilities, such as the Center for Discovery, while hewing close to the definition above, do not exhibit any or most of the features Goffman attributes to total institutions. Goffman leans heavily on examples of the most disciplinary, custodial, and punitive instances prisons, mental asylums, the armed forces, the worst of boarding schools, juvenile detention centers, the most severe monasteries, and nunneries, and even concentration camps. He doubtless could have added others: contemporary centers for displaced persons might fit his description as well. We have to ask: Are the characteristics he derives from these examples found in what opponents of aggregate living called the “prettied up institutions” that today house intellectually and developmentally disabled people? Let’s look at what these characteristics are.

19Goffman describes both the structure and intent of total institutions. Their intent, he argues, is to allow persons to be “moved in blocks” and to be under surveillance; that is, “a seeing to it that everyone does what he has been clearly told is required of him, under conditions where one person’s infraction is likely to stand out in relief against the visible, constantly examined compliance of the others” (Goffman 1961, 6-7). Structurally there is a split between residents and staff. The split perpetuates stereotypes of both residents and staff. Given the power that the staff wields, such attitudes lead to condescending treatment, neglect, and even abuse of the inmates. It goes hand in hand with what Goffman speaks of as the mortification and self-mortification of the inmate. Another structural feature of total institutions is to make the place of residence also the place of work. When work and residence are not separated, a person’s behavior in one sphere affects how they are treated in the other sphere. Goffman proposes that because the institution provides all necessities of life, the incentive to work is removed.

20Total institutions, he says, are each “a natural experiment on what can be done to the self” (1961, 12). The most devastating consequence is the loss of self, or, as Goffman puts it, the “curtailment of self”. The first step in this process is a separation between the inmates and the outer world. The isolation from the outside world is not merely a physical removal: It involves a removal of the traces of self that were once “on the outside”. Visitations are controlled; uniformity in clothing is imposed; personal objects are replaced by those provided by the institution. Goffman writes:

“Upon entrance, … he [the inmate] begins a series of abasements, degradations, humiliations, and profanations of self. His self is systematically, if often unintentionally, mortified” (1961, 14).

21He goes on to speak of the procedure of admission:

“The admission procedure can be characterized as a leaving off and a taking on.... Leaving off of course entails a dispossession of property, important because persons invest self feelings in their possession” (1961, 18).

22In “leaving off,” one casts aside any thought of inclusion in the outside world. In “taking on” one is supposed to lose any interest in belonging to the world outside the walls of the institution. I will not continue to elaborate on this most penetrating understanding of such ‘total institutions.’ The question I want to consider is whether facilities that care for people with significant cognitive disabilities must inevitably fit the description of undesirable oppressive total institutions. Is it baked into the very idea of such facilities?

4. Effects Of De-Institutionalization: Good Care And Poor Care

23The large state institutions housing intellectually disabled and psychiatric patients, such as Willowbrook and Letchworth Village in the US in the 1970s, did conform to Goffman’s characterizations. The portraits, visual and narrative, are readily available. Yet to hear about it from one who was there makes it all too real. One of the directors of the Center for Discovery worked for a while at Letchworth Village, also in New York State. She was in Sesha’s residence when my daughter, who had just been showered, was wheeled through the hallway back to her room, wrapped only in a towel. Sesha’s room was far from the shower room and close to the common room. I was in the house when I heard the Director angrily tell the staff that this was unacceptable and was an offense against Sesha’s dignity; and that her room needed to be moved closer to the shower. Within a day, a room close to the shower, which was holding equipment, was transformed, and voilà, a new room for Sesha. At the time, her remark about dignity stood out to me and made me think long and hard about what dignity meant for someone who may not understand the notion. Parenthetical remark: I have since learned that Sesha most likely did understand —perhaps not the abstract concept per se (although today I doubt even that) but the sting of having one’s dignity overlooked. I asked the director what she meant by her remark. She replied that at Letchworth, men were washed by being led to the shower naked, when in the shower, were sprayed down with a hose! She didn’t want anything resembling such treatment in her facility5.

24Even before the Olmstead decision, places such as Letchworth were closed. (Indeed, some of the residences that were abusing the plaintives were group homes, not large state facilities). The Center accepted for admission from Willowbrook and Letchworth several of their residents who had lost contact with their families. I was also told that these were among the highest functioning people at the Center, and likely should never have been institutionalized in the first place. Many have regular responsible jobs at the Center.

25There still exist some state institutions, and I am not certain of their condition. Likely they are not Letchworth or Willowbrook, but neither are they devoid of the features of total institutions. However, reports of humiliation, abuse and neglect of severely cognitively disabled people continue in some of the group homes that have replaced them, the supposed answer to closing large state institutions. The editors of Autism, remarking on the failures of integrating mentally disabled people in the community, write:

“People with serious mental illness often live in what have been termed “psychiatric ghettos” [which have] … few opportunities for community engagement (Vick et al., 2012). Today, media exposés of abuses in community settings rival those of psychiatric hospitals generation before. Complicating matters is that community services often are not up for the task of caring for individuals with more profound impairments”
(Institute of Medicine, 2001).

26Even if group homes have not reached the large-scale horrors of the closed institutions, vulnerable people remain vulnerable as long as they lack good care and supportive structure.

27With the onset of Covid, we all discovered just how very vulnerable they remain. Nursing homes and homes for those with mentally disabilities were ravaged by Covid. The reasons include:

1. Vulnerable residents have few means to protect themselves (many can’t tolerate masks) and their medical conditions made them more susceptible to serious illness. (People with intellectual or developmental disabilities were 6 times as likely to be infected with COVID-19 and 4 times as likely to die from it as the general population. Most deaths overall were among the elderly).

2. Aggregate living makes the contagion difficult to control.

3. Care involves close contact—should the caregiver bring in Covid, the intimate contact needed for her caregiving makes the infection more likely to be transmitted. For the same reason, transmission can go from resident to caregiver, and in turn to other residents and staff.

4. Poorly paid staff in the US are often working two jobs and likely to live with family doing essential work. All this means that staff are more likely to acquire Covid.

28Given the vulnerability of residents and the exposure of staff, it seems that congregate living not only does not foster inclusion in the community: It is an added risk factor in the health and well-being of significantly cognitively disabled people.

29And yet, even in the face of a highly transmittable disease like Covid, none of this is inevitable. The Center for Discovery with its 350 residents, had no death or very serious illness—and until Omicron, virtually no infections. Most residents were vaccinated and boosted as soon as the vaccine was available. The staff, too, fared well and with little serious illness and no deaths.

30When we ask why the difference in outcome in this crisis, we come to see what distinguishes the different congregate living situations and what options need to be available to people with very significant cognitive disabilities. The places that deserve to be homes for people with severe cognitive disabilities and accompanying medical frailties pay scrupulous attention to the risk factors. They find innovative means, like setting up a food mart and laundromat at the Center for to lessen their staff’s risk of contagion. They do these things because they genuinely care about, as well as for, their residents and their staff. They maintain rigor when it is in the service of the best care and flexibility when it addresses deep human desires—desires for relationships, joy, and dignity. They are innovative and creative in finding ways to give people with cognitive disabilities the best lives they can have—and they do not put a ceiling on what the best can be. What about inclusion and autonomy? These are not self-standing ultimate goals. They are in the service of the deepest needs for meaningful relationships, respect, and the dignity we owe one another, and for the opportunities to experience joy.

5. The limits of, and conditions for, an independent living model

31Today disability advocates are not advocating for group homes. The demand from advocates and self-advocates, some of whom hold government positions or sit on federal panels, is instead to allow people with cognitive disabilities to continue to live with their families or for adults to reside in their own apartments with full-time or intermittent assistance. The call is for “independent living” modeled on the independent living for physically disabled people. In addition to personal assistants, this requires services in the community, and access to employment that is competitive with nondisabled people when properly accommodated.

32For some, maybe for most, people with cognitive and developmental disabilities, this is a good prescription. But it is realizable only when funding is adequate to provide assistants (chosen by the disabled person), services, acceptable jobs and travel accommodations. An oft-stated goal of the disability community is independence, especially independent living. Disability rights advocate Judy Heumann (1947-2023) often pointed out that independence is not being able to do everything for yourself, it is rather a state of mind and how you can live with the assistance you need. I take it she means independence is not self-sufficiency but self-determination. And if this is what she means, I do not object to independence as self-determination.

33But that is not the weight that the term independence carries in our society—just as individualism is less about the distinctive individuality of each human being, and more about insisting that others do not interfere with you and your putative rights. When people were released from psychiatric asylums, they were given little or no support. They now live in our streets or in homeless shelters fearful of aggression from others; or they transgress in ways that land them in our prisons. They have moved from one total institution to others, many of which are arguably worse and often lethal. This is not an independence worth fighting for. Many people with psychiatric and physical disabilities find themselves in poverty. According to the US National Council on Disability: “People with disabilities make up approximately 12 percent of the U.S. working-age population; however, they account for more than half of those living in long-term poverty” (NCD, 2016). Why think that the significantly cognitively disabled would fare better?

34As I remarked, some people with cognitive disabilities, when proper assists are in place, may be not markedly different functionally than many who are not considered disabled. But for some, no number or kind of supports will “normalize” them so they may live independently. Even with accommodations and supports, they will not be employed in jobs or in jobs that will not land them in dire poverty.

35What about families? What about remaining in a family home and being supported financially in a home setting? Some adults with cognitive disabilities can comfortably continue to live with parents, can assist with housework and serve as invaluable companions. Accompanied by their parents, they can venture out into the community and enjoy shopping, entertainment, and recreation. Some, however, have difficulties with self-regulation and become aggressive, threatening the well-being of other people in the family. Still others have medical fragilities that require 24-7 vigilance and nearly as much medical knowledge as a nurse. And some families are psychologically and materially unable to provide the care their loved ones require. These families would need assistance for the life-long care of their disabled son or daughter? In the United States this is a difficult proposition. Efforts to provide these are almost always met with resistance. The answer families receive is often “no” or if they do receive assistance is rarely enough or not the kind that is most helpful. As parents grow older, they are less capable of caring for their adult child; they need increasing aid.

36In the US, a few families have managed to secure a home for their severely physically and mentally disabled son or daughter where they live “independently”, sometimes with a roommate or two. Caregivers are on hands 7 days a week, round the clock. Where medical frailties are a concern, a nurse is available. In addition, there is a day treatment program in place. This does sound like an ideal plan for an adult son or daughter who no longer lives at home. The models in Nordic countries have attempted, with varying success, to change the paradigm for people with intellectual disabilities. Sweden, for example, has a complex structure that offers support of various sorts. In addition to a personal assistant, a personal representative is assigned to a psychiatrically or an intellectually disabled adult:

“A personal representative is a form of support for persons with intellectual disabilities who need help with influencing their situation in life and to be able to participate more in the community” (Lindberg 2021).

37This person representative is distinct from either the hands-on caregiver, a personal assistant, or the family. In addition, a form of cooperative knowledge support is offered to parents to allow them to navigate services and supports that are available. In Denmark, they have also instituted assistance for parents. In the case of parents of minors, there is compensation for loss of income if they leave their job to care for the disabled child.

38Although many caregivers in the Nordic countries, as in the US, do not have extensive education or training specific to understanding autism or intellectual disability, there is a current emphasis on providing such education to caregivers. Furthermore, caregivers, personal assistants, and personal representatives are well compensated and respected relative to what caregivers receive in the US, where training is minimal. In the US, there are no certificates or educational opportunities related to this specific sort of work. Those who care for intellectually disabled people in the US are often immigrants or come from other marginalized populations whose credentials or skills are not very marketable. Most are very caring despite the inadequate pay. Yet many take these jobs because little else is available to them. The contrast with the conditions in the Nordic countries is striking. Given the differences between the US and the Nordic countries approach and respect for caregivers, I, as a mother, have difficulty feeling comfortable with my adult daughter living with a single aide who has full responsibility for her care.

39I bring up the Nordic models because if we are to eliminate congregate living for people who are significantly cognitively disabled, we would need to change the paradigm in multiple ways. The US, and I suspect many countries, are unprepared to undertake such change. Shutting down residential facilities would leave the responsibility for care mostly on parents. Parents who take on the responsibility of caring for their adult children receive no compensation for lost income. As parents and their adult children age, they are increasingly less able to manage such care of their adult children while also attending to their own increasing needs.

6. The Search For Answers beyond total institutions

40When we finally chose to have Sesha live without Mom and Dad, I was scrupulous about the home we would choose for her. I had a choice. I could have kept her home and supplemented from our monies whatever the state was unwilling to pay. Most parents have no such choice. (Incidentally, the Center is one of the few places that is run by a private agency but has no tuition at all. Its basic business model is that it is reimbursed by the state for its services and it continues to raise funds from donors to expand and increase the quality of those services). They need a placement, wherever and whenever they can get it.

41Nonetheless, the charges that Goffman levels at total institutions are disconcerting. Recall that Goffman remarks, “[Each] is a natural experiment on what can be done to the self” (1961 : 12). Places that demonstrate the virtues of the Center may, in fact, be experiments, but they are experiments in how to provide the best possible life for the people they care for. There are few places that have a visionary leader, one who has total respect for the people under his charge and considers the Center--along with its farms, concert spaces, and hiking trails--a place “inspired by disability”. At the Center, persons are never viewed as “persons to be moved in blocks”. They are not “stripped of an outside identity, isolated from a former self, mortified, and surveilled”. Still, a close watch is necessary to keep the residents safe—from themselves and an errant staff member. An important part of the Center’s efforts has to be directed to attempts to master state politics and sharpen its fundraising ability in order to have enough resources to provide excellent care and provide residents with a good life, however, the political winds blow.

42Goffman also pointed out the dangers of having communities that care for vulnerable people be situated in rural areas, away from the larger communities. Placing housing for vulnerable people away from “peeping eyes” can be isolating and can too easily lead to unchecked abusive practices. The best communities are also set in rural areas—often because that is where there is sufficient land at affordable prices. But also because farm-like settings allow residents to have more contact with animals, with nature, and with meaningful work available at a farm.

43My daughter is less isolated from the larger community in the small towns near the Center than she was either in New York City or in the suburb where she spent most of her life. If I brought Sesha to a local restaurant, she would be invisible or hypervisible. In the rural towns near the Center, we nearly always encounter people who know her, either because they work at the Center, or they had once worked there. Moreover, the local restaurateurs are familiar with disabled people such as my daughter, and she is greeted with warmth and acceptance.

44Furthermore, while such residential facilities may be in rural areas and not fully integrated into the life of the larger community—the one my daughter lives in brings the outer community to them. For example, the Center has a soccer/ baseball field on its premises that is used by the community. They have a community-supported farm from which members of the larger community can buy shares, as well as a clinic, a daycare center and a summer camp that also serve the larger community. The Center brings employment to the area, and it is these same people who greet Sesha with a smile and a “how do you do?”.

45Another one of Goffman’s caveats and features of a total institution is the concerted effort to separate the “inmate” from all they have known before. One way to ensure such isolation is to restrict visitation. When Sesha first moved to her new home, we could come to see her any time – day or night—without asking permission or making an appointment. (One parent told me she purposely showed up unannounced at different times and on different days). Covid, however, has changed this provision for parents. Temporarily, I hope.

46In the earlier days of the pandemic, we could visit (once we could visit) for a very limited time, often with a person there to ensure that we wore the protective equipment as we were instructed. With the restrictions of COVID-19, I felt for the first time what it would be like to have this forced separation and a regimentation of visits. Although it was for the safety of the residents, nonetheless, it seemed to go against the assurance that the way to prevent the Center from ever becoming Letchworth Village was to maintain the close contact and involvement of family. Covid is still with us, though the threat has receded. Slowly the restrictions are being removed, and we see the openness we so valued returning.

47Yet a threat like Covid or diminished government funding can endanger the ability of an agency to provide the access parents wish to have and the oversight they hope to provide. The involvement of families can be messy, and many organizations do want to keep families at an arm’s length. The new restrictions imposed by Covid can come to be seen by staff and administration as favorable. But this is the road to making a residence more institutional in the pejorative sense. Vigilance and commitment on the part of families, the larger community, and the agency itself are required to ensure such a slide does not happen. The loss of family involvement creates a vicious circle that affects the quality of care of desirable residences but also: without the attention of families, the chances increase that such residential programs become victims of funding cuts and austerity measures. Funding cuts exasperate all the dangers of places of already undesirable total institutions.

48Goffman also warned against the dichotomy set up between staff and residents. The separate identities and lives perpetuate the stereotyping of each. Each day, the staff leaves and as they do, the possibility that the separation encourages stereotyping is real. In the case of residential facilities of significantly cognitively disabled people, it is stereotyping directed at the residents that is primarily at issue. I imagine that some staff may come to work with stereotypes. It is the function of the administration to set out what sort of staff behaviors are and are not tolerated. And the proof, so to speak, is in the pudding. For the most part, I have seen that staff view the folks who are residents as full people—not stereotypes garnered from dominant ableist views. Although it is hard to say that the residents stereotype the staff in this situation, families may and such stereotyping can affect policies toward staff. To avoid what Goffman sees as inevitable, each group viewing the other as less than the individuals they are, many things need to be in place: a coherent philosophy to guide the treatment of residents and an understanding that the care provided to residents should be reciprocated by giving the caregivers the care that they require. (At the Center, a good example is the quality daycare facility the staff can take advantage of). Good training, good pay, and the involvement of the hands-on staff in decision-making all can lessen the adverse effects of the bifurcation. Where there is a circle of care—not a one-sided giving of care, residents and staff can see each other as full persons and not as stereotypes.

49The caveats that Goffman offers are significant and need to be considered. The editors of the journal Autism write that while the options for people with developmental and psychiatric disabilities—ranging from relatively unmonitored apartments with 1–2 people to segregated farming communities with intensive staff-to-resident ratios, and everything in between—may all be “consonant with social values of inclusion and participation, there is little hard evidence regarding which setting benefits which person” (Editorial, 2017 : 810). The editors call for more research concerning the effects of housing on well-being, and who benefits from what sort of housing. We should note that while such research is needed, research can too easily incorporate premises that skew the inquiry. If we think autonomy and independence are central, we will look for studies that favor some arrangements rather than others. But why assume that these are the values that will bring about the best life?

50To my mind, whether only living integrated in the community is acceptable, or whether congregate living for significantly cognitively disabled people confers benefits not found in integrated settings has to do with what the disabled person herself wants for herself. However, as we are dealing with people with significant cognitive disabilities, many who have no, or only very little expressive language, asking isn’t always possible. I couldn’t ask Sesha if she wanted to live at home with us, in her own apartment or at the Center. (As we since have found some means of communication, it is no longer unthinkable that I could get an answer. But even so, will we have confidence that she understands the full weight of the question?).

51In the absence of further research—research that is not skewed by one vision of a good life for disabled people—we are left with the option to trust those who have cared for the person to be able to read nonverbal signs and to anticipate answers to complex questions. Today I can judge from my daughter’s response to events like coming home to us and leaving to return to her home at the Center. She is almost always very happy to see us when we pick her up, and so I had worried that she might not want to return to the Center—but oh, how I was wrong! At the end of a long weekend, I notice that she gets sullen toward the end of the stay. “Perhaps she is sad to go”, I think. The laughter and giggles when she gets into the van and arrives at the Center put all my fears to rest. She is delighted to be back.

52At the Center, she is her own person along with others she views as her friends; everyone knows who she is, not only the staff at her own house, and but those who work in other residences and have grown to know her over the years. Nearly all give her a joyful greeting. There are activities, parties, concerts, and time alone in her room (which I used to fret about, but now recognize as something she can value). I trust that my sociable daughter loves her community and that her life is immensely enriched by it.

53The slide to a total institution is always a possibility—maintaining a place like the Center as the joyful, meaningful place it is, is a precarious undertaking. But everything in Sesha’s life hangs on a precipice—everything that makes her life good is precarious. One can and should put up guardrails against the forces that threaten that good life. But such precariousness is not limited to congregate living situations. Isolation, neglect, and abuse are possible in “family life” or independent living. We need to unpack ideas too often touted in disability discourse—independence, autonomy, productivity, and even inclusion—to understand how these are realizable in the lives of significantly cognitively disabled people.

7. Conclusion: Inclusion and Community

54The value of inclusion is central to the debate about housing. Insofar as humans are social creatures, the sense of being included and valued by others is likely present in even those with very severe cognitive disabilities. How we are included, and what we are included in, are still more important. Are we included merely by occupying a physical location—living in an unmonitored apartment, for example—where our neighbors will have nothing to do with us and find us bizarre or even repugnant? Can we not better experience the good of inclusion in a community of people much like ourselves—people who see the world from a perspective consonant with our own? I venture that my daughter feels far more included in her current living arrangement than when she was wheeled through the mostly empty streets of the bedroom community we called home for nearly 25 years—or the streets of New York where she is either invisible or all too visible.

55Inclusion is meant to be inclusion into “the community”. Let us dwell for a while on the idea of “the community”. What is the good of being in the community? It’s fair to say that every flourishing life for a human being takes place in a community. As human beings are inherently social creatures—we often can’t even survive, much less thrive, without a nourishing community, we have seen that there are dangers in the segregation and isolation of total institutions that go to the very core of our self-hood. The notion of community that is operative in discussions of inclusion is too often defined only by a geographic location (e.g., maybe only by a circle drawn on a map) in an area occupied by the so-called normal or nondisabled population.

56My difficulty with such a conception of community is that it favors activities, therapies, and workplaces that are “in the community” over the best expert services wherever they are found. The argument to be made for living among and accessing therapies and work in spaces that are “integrated” is the thesis that the disabled person with a “minority body” (and mind) can experience themselves as equals when they are among those in the majority. Furthermore, for cognitively disabled people, there may be cognitive advantages in mixing with others in situations where there is normal stimulation –advantages that might compensate for a lesser quality of service.

57Community, however, has meanings other than proximate geographical locations. Various philosophers have considered the meaning of community. Twentieth-century German philosopher Edith Stein contrasted a mass [of people] with a community: “[C]ommunity and society presuppose more complex forms of sociality. In particular, the community is characterized by its members sharing a collective life (Gemeinschaftsleben)” (Stein 1986). Max Scheler, a German philosopher from whom Stein drew her inspiration, saw communities as “groups whose members co-experience the same mental states: such collective experiences give rise to a single stream of consciousness, whose subject is the community itself” (Scheler, Frings, and Funk 1973/1913: 530). Clearly, the last is too strong a definition of community, but it underscores the importance of being in a community whose members see themselves as having something significant in common.

58The extent to which such commonality is important to a person varies. Whether we are or are not (yet) disabled, we differ in our need to associate primarily with those whom we share values, an enterprise, a sense of comradeship, the identity we have affirmed for ourselves, or one which ties us to family. On one end, there are those whose preference is for the anonymous city where they can be left alone. On the other, there are people who go off somewhere, often to a remote rural location or to one neighborhood (often at the edge of town) to form an “intentional (rather than found) community”. A community of this sort may best address our wants and desires. But communities often also serve specific needs. People with disabilities who are able to choose sometimes choose such segregation to satisfy needs that are not met in their found communities, whether that be protection from a hostile dominant group or the ability to share a means of communication, such as sign language users, or, as in the case of the children of many of us, care and creative ways to bring out latent capacities.

59Others prefer to be at home with their parents, and parents will share that preference if they have had adequate support. The family, when it is a nourishing one, is a prime community for anyone—disabled or not—and critical when someone has multiple impactful impairments. Many, however, are anxious to move out, to be among peers who share their interests.

60Whatever community a very vulnerable person is in must be one that is guided by love, care, and respect. And there need to be levels of oversight. In an ableist society, we need to guard against the worst tendencies that disabled people, especially cognitively disabled people, may evoke in others. Tending to a vulnerable person brings connection and, not infrequently, love, even if it was not the motivation for assuming this responsibility. Still, tending to a person who is vulnerable and dependent can also bring out impulses to exert power over another human being. Those impulses, when unchecked, will be expressed as abuse, neglect, and humiliation. Caring for a fully dependent person, who may at times even be aggressive, can, in certain circumstances, also exasperate an otherwise caring person. Parents know the feeling when we are sleep-deprived, exhausted, unsupported, and unable to fulfill the task of caring. Therefore, systems of oversight as well as support are crucial.

61When a larger organization oversees a residence, there are opportunities for oversight that are lacking in situations where you have a vulnerable person with a one-on-one caregiver or in a small group home that does not have to answer to anyone. We know that larger organizations can turn oversight into mere surveillance and are capable of depriving workers of the means to care. They may have financial interests that override the well-being of their charges, allowing them to turn a blind eye to abuse, neglect, and cruelty. How to inject accountability into systems of care is always a difficult issue. Even goodwill does not suffice. I, for one, have more faith in having a larger entity that I have vetted and determined has the right intentions and means to provide the needed oversight than to leave my very vulnerable daughter in the hands of a caregiver or two who operates without oversight.

62Full access to the place of residence by families is an additional and indispensable form of oversight. Some families may not participate for many different reasons. But, as Carol Cohen6 has remarked, families are there for the long haul. Their commitment doesn’t come and go with a job. Being there for the long haul is perhaps the bedrock of care and therefore is essential to overseeing the care others provide for their loved ones.

63The idea that one is there for the long-haul calls to mind another definition of community. The contemporary philosopher Ronald Dworkin7 centers community on the obligations members of the community have to one another. He writes of four conditions for a genuine community:

“[O]ne, each member of the community sees herself as having special obligations to the other members; two, they see the obligations as owed to each of the others personally; three, these obligations are understood to flow from a concern for the well-being of each of the members; and four, the obligations are understood as flowing from a plausible version of equal concern for all the members” (Dworkin 1986,:199-200).

64Unfortunately, many of our found communities (understood in geographic terms) satisfy few, if any, of these conditions. Rather than true communities, they are what Dworkin would call “bare communities”. When you have exceedingly vulnerable populations, it is critical to have a sense of obligation to the “well-being” and “equal concern for all members”; this is non-negotiable. In intentional communities that truly are communities and not just aggregations of people living together, such obligations and commitments serve to ensure that all members of the community are treated with respect and dignity. The sense of being included in a community derives from the fulfillment of the conditions that Dworkin provides. The sense of obligation of which Dworkin speaks does not always prevail in communities delineated by geography—and obligations to disabled people is even less assured in mostly ableist communities. The assertion of rights may compensate for a lack of good will and can even eventually mitigate the ableism. But this is much less to be expected when the disability is significant and cognitive. We cannot expect people who fail to assign the equal value to significantly cognitively disabled people to understand that they owe them obligations, in particular, ones that “are understood to flow from a concern for the well-being of each member of the community”. It may be possible to eventually alter these attitudes precisely by including the significantly cognitively disabled. But the changes can extract a high price on those who are supposed to lead the way.

65In the end, what will determine good outcomes are a high quality of care, respect for cared-for and carer alike, good supports, oversight, and adequate resources. When these fail, community fails, inclusion fails, and the goals of improving lives are frustrated no matter the setting.