Tag Archives: disabilities

The Women of Can’t Catch a Break: January 2017 Update

Life is never boring for the women of Can’t Catch a Break. Over the past months they’ve faced serious health problems; they’ve struggled to care for their children and grandchildren; they’ve suffered at the hands of violent men; and they’ve remained trapped in an institutional circuit that often seems to present more hurdles than actual help. Yet that is not the whole story. Many of the women continue to build and draw upon social networks that provide them with places to stay, help with childcare, emotional support, and medical advice.

See Summer 2016 Update to catch up on the women and to help put the January 2017 update into context!

 

Andrea has not been well. Though trim and fit-looking (she’s an avid fan of exercise tapes), she’s been having trouble breathing and her body has been retaining fluids for almost a year. By December 2016, after a string of hospital stays, she was placed in a nursing home. When we spoke she told me, “I hate to tell you but my heart and lungs are not doing so well, so they brought me here. There’s nothing they can do for me at the other hospital.”

I’ve known Andrea for almost a decade and I still can’t tell whether it’s stoicism, fatalism, optimism and / or complete trust in modern medicine, but she was far more upbeat than I imagine that I would be in her situation. As always, she is comfortable staying in a medical institution — perhaps more comfortable than staying at home. Unable to read (she has had mild cognitive disabilities all her life), she finds navigating daily life on her own to be a challenge. In the hospital or nursing home she is looked after, there are professionals around who can explain things to her, and with her friendly demeanor she can always find a nurse or other staff person to chat with her for a bit. “I’m fine, Susan,” she told me. “I’m holding my own. I can still tell jokes and whatnot.”

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Carly (see “A New Home for Carly“) still has not received her baby back from DCF (child welfare department.) Without the baby, she is no longer eligible for the housing subsidy for her two bedroom apartment. For several months after losing her apartment she was on the streets. As of this writing she is couch surfing with a “friend”. (I put “friend” in quotes because Carly has a long history of being taken advantage of and even robbed and raped by so-called “friends”).

Since the baby was taken away, she has become extremely distressed, tormented by hostile spirits, suspicious of conspiracies to hurt her and to steal her baby, and hospitalized (voluntarily and involuntarily). During one hospitalization, “I was shot full of drugs – of Haldol. That’s why I won’t go back there.”

Through all of this, she remains focused on getting her baby back and attends frequent meetings and appointments with social workers, court-appointed psychologists, lawyers, and doctors. She carries around a large pack with her everywhere she goes. The pack contains “all the papers that prove that the baby is mine and that I took care of her properly. I have her umbilical cord, her footprint from the hospital, and records showing she had her infant check-ups.”

I have spent a great deal of time with Carly and honestly cannot figure out how much of what she does and says has to do with her deeply held belief in the active presence of good and evil spiritual powers in this world; how much may be symptoms of mental illness — even psychosis; and how much may be simple naivete. I can say that from what I’ve seen she took proper care of her baby, but I acknowledge that Carly likely tries to show me that she is stable and competent. I don’t envy the DCF workers, psychiatrists and judges who ultimately will decide whether the child is better off with Carly or in foster care.

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Daisy remains limited in her ability to care for herself, but both of her children have stepped up and are able to help her out. Her son has arranged for a supermarket to deliver food to her at regular intervals. She is not up to cooking (she is allowed to use the kitchen in her rooming house), but can prepare simple breakfasts and frozen meals for her lunch and dinner. She continues to enjoy the program for disabled adults that she attends three days each week, and considers the other people there to be her friends. And, “I do my laundry every single weekend.” She sees her daughter at regular intervals and her son and his wife took her along on a road trip to Ohio to visit her in-laws for Thanksgiving.

She does feel lonely much of the time (on the days she does not go to her program she rarely talks to anyone), and spends more time than she’d like cooped up in her room watching television.

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Francesca (see “The Bitch at the Welfare Office“) is still living in a working-class suburb with her son and younger granddaughter. She is busy raising the child and has landed a part-time job at a local supermarket. She does not earn enough to be independent, and continues to rely on her son and boyfriend (she has been in several serious relationships during the past year) for financial support. Unfortunately, that support comes with strings attached. In the case of her son, the strings are expectations that she take on the lion’s share of child care. In the case of her boyfriend, the strings are a matter of exerting control over her time and activities. But overall she is happy with her current life and posts encouraging comments on Facebook at least once a day.

One of Francesca’s greatest assets is her ability to nurture social ties. Over the years she has maintained a strong relationship with the mother of her older grandchild. That relationship is paying off now as the two women help one another with child care. All in all, Francesca has managed to create a safe, cozy and loving family and home for her granddaughter.

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Ginger (seeThe New Price of Freedom“) is back in touch with me on a regular basis! In the summer and early fall she was living on the streets. When I ran into her she told me she was smoking a lot of crack and staying with her “trans mother” (an older woman who had helped her come out as trans when Ginger was in her teens.) A mutual friend told me that he saw her fish around in the garbage and take out a cup and then sit down on the sidewalk with the cup in front of her to panhandle.

A few weeks later she called me from a “safety” phone that she had been given by an agency that helps homeless people. She had moved in with her Aunt after “a homeless man from the Boston Common hit me in the head.” She had a concussion and spent three days in the hospital. When we got together for coffee she told me that she actually had been beaten up three times by the same homeless man who called her “ugly names” because she is trans. When she went to the police they told her they wouldn’t do anything because they told people to stay out of the Common at night. She also had her ID stolen. When she went to meet with a housing advocate he told her that she needs to get her ID first. For Ginger, this is a pretty overwhelming task, involving visits to various offices and paying fees that she cannot afford to pay.

Throughout late fall and early winter she has stayed off crack, resumed her beloved weekly bingo games, and returned to the excellent doctor who has helped her with anti-depressants and hormones over the years.

In November she moved in with an old boyfriend who lives in a rooming house (SRO) but, “We got into a domestic dispute. He hit me over the head with a lamp.” I asked her if she called the police. She said she couldn’t “because I’m a known trespasser [in his building] and they’d arrest me.” For now, she is staying with his brother and trying to move forward on getting her own housing.

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Isabella (see “Failure by Design: Isabella’s Experiences with Social Services“) continues to grieve for her late husband. Over the past months she’s lived in several different apartments, each of which turned out to be problematic. She has come close to getting a job but in the end things have fallen through. She continues to help out friends and acquaintances who need to get into detox or who need help managing their methadone regimes or other drug-related health problems.

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Joy continues to cycle through psychiatric wards throughout the Commonwealth of Massachusetts. In September I visited her in a locked psychiatric ward where she’d been taken after attempting suicide. She told me that she had overdosed. “I just tried to end it. But someone found me and here I am. I woke up in the hospital with tubes everywhere. They told me I almost died. … I had not used drugs for a long time. I got high that one night to kill myself.” The person who found her called 911, and then stole her phone.

A long chain of miserable events had led her to the point of wanting to end her life. Both of her parents have been unwell and may not be able to care for her daughter for much longer. She did not have a place to live and had been staying with a man who constantly criticized her and told her that she can’t do anything right. And she’d spent the previous month in prison. “A drunk woman started fighting with me [in the street.] I slapped her to get her to let go of my hair, and the police arrested me. I was still on probation from [an old] charge of soliciting a police officer [for sex] so they locked me up. I asked them to take me to a hospital and the police refused. When I saw the judge after a month he said to me, “You’ve been in my courtroom at least twenty times. I see that you have paid all but $260 of your restitution and fees [on old charges]. That’s enough. I’m releasing you on time served and remitting the remaining payments. Your probation is terminated.” Joy plead guilty (she told me she didn’t know why) “and that was that. I was released.” Unfortunately, on that same day a former boyfriend who had beaten her up (badly) was in court on the domestic violence charge. Because she had to come to court for her own hearing she was not able to go and testify at his hearing, and he was released. She asked to be able to go and testify but “I was told that wouldn’t be possible because I had to appear at my own hearing.” After he was released, Joy said, he told people that he would track her down wherever she went. She is terrified of him.

While we chatted at the hospital I noticed that her eyes were puffy and her speech slightly slurred. She said she was given Librium to help detox from alcohol – she had begun drinking over the summer and had become addicted. She’d also been put on Haldol and a few other psychiatric medicines.

Her hospital caseworker joined us and we talked about where Joy would go after the hospital releases (at some point in the next few days.) The caseworker had been tasked with setting up Joy’s outpatient therapy, not with finding her a residential program. Joy made her own call to a rehab program she’d been in previously and was told that they couldn’t take her unless she detoxes there first. “But I’ve already detoxed here! They told me to get high and then come to detox and then I could get into the program.” The caseworker confirmed that this is indeed the case, and told Joy that, “You need to do what you need to do to get into a program.”

We asked the caseworker about getting Joy into a group home under the auspices of the Department of Mental Health (DMH). The caseworker explained that group homes only accept people coming from state mental hospitals and Joy is not sick enough to need to go to the state mental hospital. I pointed out that Joy has repeatedly tried to kill herself. She replied, “Joy is high functioning and does not fit the criteria for a state hospital. What you need to do, Joy, is go to a homeless shelter. They will work with you to help you save money so that you can get an apartment. You need to get a job and then the shelter will reserve a bed for you. You need to go to your outpatient appointments and see the doctor. It’s a lot of work but you have to do it. It’s up to you to do the work.” Incredulous, I pointed out to the caseworker that Joy cannot get a job or an apartment. She has three felony convictions, has been homeless since age 18, and has already been in just about every shelter and program in the state.

We then asked what will happen if no placement is found for her when she is discharged. “You will be given two weeks supply of your medication and we’ll set up an appointment for you with an outpatient psychiatrist.” Joy pointed out that it takes longer than two weeks to get an appointment.

The caseworker was not being mean-spirited. Rather, she was a very young woman with no concept of the realities of life faced by someone like Joy. My sense is that she truly believes that if Joy tries hard she’ll make things work.

By November Joy was in another locked ward in another hospital – her third of the fall. When we spoke on the phone her speech was slurred from the medication they gave her. “They are discharging me today – couldn’t find a program or placement. They’ll pay for a taxi.” She told me that she would be going back to [the emotionally abusive] man she’d been living with when she’d tried to kill herself in September. She knew this wasn’t a good solution, “but I have nowhere else to go.”

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Kahtia (See “Prostitution, Decriminalization and the Problem of Consent“)

Throughout the first part of the fall Kahtia was doing well – volunteering everyday at a soup kitchen and attending multiple AA and NA meetings each week. With pride in her voice, she told me how many people the soup kitchen feeds each day and how much the staff appreciates her dedicated work. Most important, the family court judge told her that if she continues doing what she has been doing she will get her daughters back from DCF custody in a few months.

Her daughters were not doing as well. They had been taken away from their third foster home because the foster mother hit one of them. Now in foster home number four, one of the girls had become very introverted. The new foster mother took them for haircuts, which she is not supposed to do without Kahtia’s permission. “She gave them yuppy hair cuts. I mean, they look cute but it’s not what I would have done.” Kahtia expressed concern that the girls will become accustomed to living in a wealthier household and will resent her when they come back home to her.

Later in the fall Kahtia called to tell me that, “I am going through the worst thing in my life. DCF entered a charge of sexual and physical abuse against my husband [the girls’ father]. They haven’t told me any details and they’ve canceled home visits for the girls.” The story, as best as she can figure it out, is this: Quite a while ago, before she lost the girls, they told her that “Daddy touched me”. She took them to the hospital where they were examined but there were no physical signs of rape and no follow-up inquiry. Several months into their foster care time they said the same thing – that “Daddy touched me” (apparently referring to the same incident.) The girls spoke with their therapists but nothing more was said and nothing else happened. Then, almost a year later, in their third foster home, they mentioned it again. “They sent them to a  trauma specialist – I don’t even know what that is – and now the whole thing is under investigation. I don’t know why they talked about this now. Did something new happen in foster care that triggered them to say this? I don’t know what is going on. I don’t know if my husband really did hit or sexually abuse the girls. I feel guilty for not protecting them. Or if the whole thing is made up by DCF? I don’t know. I’m devastated, Susan, especially, you know, because I was a victim of incest and of rape.” She told me in tears, “All I ever wanted was a family, a husband and my children, a house with a white picket fence and a dog in the back and a cat on the window sill.”

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Melanie‘s doctors seem to have stopped looking into her medical problems and are concentrating solely on her PTSD. She has been placed on Disability (SSDI), which does not please her. But she is allowed to work part-time and has arranged to return to the shelter where she had been working, albeit as a “relief” staff rather than a shift supervisor.

Her big news is that — after several tries — she passed her test for her learner’s permit. She feels that she is able to drive, but because of her learning disabilities she’d “bombed” the written test. This time she was allowed to take the test with pencil and paper (instead of on the computer), and the person who administered the test was nice, which allowed Melanie to relax and focus on filling in the right answers. “I feel that everything is coming together!”

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Tonya (see “Knowledge is Power“) is still living in the same apartment. She is dedicated to raising her son and helping out with her grandchildren. Much of her time and resources are eaten up by  family members who come to her for a place to stay and assistance of various sorts.

Her son is now in school and there is no role for her there as a volunteer. “I need something to do but don’t know what to do.”

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Vanessa, now a grandmother, is staying at a homeless shelter. She has not had stable housing for several years. She looks forward to holidays when she can come stay with her mother for a few days. Other than those visits, she seems to be holding steady — no major disasters but no progress in terms of housing or employment.

 

To read previous updates click on:  Summer 2016  New Years 2016   Summer 2015   Christmas 2014 / 2015    Fall 2014 

 

 

Uninsured in Texas, Then and Now

In previous posts, I shared stories of Americans who had been uninsured when I first met them a decade ago and who, in the wake of the ACA, now are insured. These stories were inspiring, encouraging and – in a few cases – disappointing in that health insurance alone cannot make up for a lifetime of sub-par living conditions, harmful working conditions, and the cumulative ill effects of inadequate health care.

As the president-elect and Republican congressional leaders are reiterating promises to repeal the Affordable Care Act, it’s crucial to remember what it’s like for Americans to try to scrape by without dependable access to health care. The experiences of people living in states that elected NOT to expand Medicaid eligibility under the ACA serve as a wake-up call for what things were like during the bad-old-days. In this article published in Health Affairs I share the story of Texas parents valiantly struggling to care for a child with disabilities, even while their own health deteriorates due to lack of medical attention.

I ended that article with a section I called “Playing Prophet.”

For the time being, at least, it seems unlikely that the Texas health care landscape will change. The barrage of anti-Obamacare radio, television, and billboard ads I heard and saw when I visited Texas during my research represent a well-financed campaign that, unfortunately, has convinced even those people who would benefit the most from the ACA.

Luis and Daniela’s situation probably won’t change much, either. Luis will get older, still working long shifts driving trucks and loading and unloading them. Daniela will age, too, still lifting Alexa. Alexa will never be able to care for herself. And her brother, now a teenager, will age out of CHIP and either become one of the lucky few in the Rio Grande Valley who finds a job that offers insurance or hope and pray that he remains healthy enough not to need much medical care. It’s likely that the next time I visit them, either Luis or Daniela, or possibly both of them, will have become too disabled to continue working and finally will have health care coverage through Disability—which will come at the price of a substantial drop in family income as well as a blow to their self-esteem as providers. It’s hardly an ideal solution for their family or for Americans overall.

Post-election, this prophecy actually feels overly optimistic. In light of Republican promises to privatize Medicare — as well as the president-elect’s mocking impromptu performance and history of unethical practices regarding people with disabilities — I fear that the family’s worry that Daniela will end up in a horrid, underfunded institutional will happen sooner rather than later.

Disabled Rights

This article was first published on Truthout

According to reports from Washington, the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) may come up for a vote in the Senate (again) this week. The last time it came up, two years ago, it did not pass.

On the face of it, the Convention does not seem in conflict with American laws or values. The core principles spelled out in the Convention are respect for the inherent dignity of all persons, the right to individual autonomy including the freedom to make one’s own choices, non-discrimination against persons on the basis of disabilities, full participation and inclusion in society, equality of opportunity, accessibility, respect for the evolving capacities of children with disabilities, and respect for the right of children with disabilities to preserve their identities.

Initially negotiated under President George W. Bush and signed by President Barack Obama in 2009, the Convention has been ratified by 146 countries and is backed by virtually all US disability organizations, veterans’ organizations and women’s organizations. According to supporters, the Convention reaffirms many of the same safeguards already legislated in the Americans With Disabilities Act, including access to education and prohibitions of discrimination in hiring. And while it does not in any way weaken US domestic law or surrender US sovereignty, it provides a clear statement that America has joined with the international community in recognizing the rights of all people regardless of abilities or disabilities.

The most vocal opponent, pressing Republicans to vote nay, has been the Home School Legal Defense Association which maintains that the Convention could undermine the rights of parents, supersede US law and compel government funding of abortions. (There is nothing in the Convention that suggests this would be the case, but “abortion” is always a good buzz word for ginning up opposition to just about anything.).

Our failure to ratify UNCRPD is consistent with US refusal to sign other human rights treaties. For example, the US is one of only three countries not to have signed the Convention on the Rights of the Child. (The other two are South Sudan and Somalia.) We haven’t ratified the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW), the world’s primary document on women’s equality. And we haven’t signed The Convention against Enforced Disappearance, which prohibits the secret detention and abduction of people by the state.

Opposition to ratifying all of these treaties follows a fairly consistent line of argument: International treaties infringe on US autonomy and sovereignty, and anyway, “we” don’t need these treaties since we already are “better” than the rest of the world. Regarding the UNCRPD, Will Estrada, HSLDA’s Director of Federal Relations declared, “Our country has been a world leader for people with disabilities. We don’t need to ratify this treaty to do that.”

Disability and Poverty

Mr. Estrada is incorrect. In the United States close to 38% of working age adults with severe disabilities live in poverty; the children of poor parents are substantially more likely than children of non-poor parents to have a physical or mental disability thatlimits their activities and having a child with chronic illnesses or disabilities is associated with greater poverty for parents.

American responses to disability are based on needs rather than on rights; that is, we allocate resources to help individuals on the basis of shifting definitions and thresholds of “neediness” rather than on a stable foundation of inherent rights to goods such as food, housing and healthcare. We also tend to be suspicious of claims of neediness. Services for those who are disabled typically require recipients to spend great amounts of time and energy certifying their eligibility and place a great deal of power in the hands of doctors, courts and bureaucrats to decide whose needs are legitimate. Our safety nets for people too disabled to work – SSDI (Social Security Disability Insurance) and SSI (Supplemental Security Income) – allot average monthly stipends of $1,186.60 and $536.75 respectively. That is not enough to cover the cost of daily necessities of life in most American cities, let alone sufficient for disabled people to live with dignity.

The higher SSDI are provided to individuals who have worked a sufficient number of years for employers who paid into Social Security; SSI is for those who have either been unable to work or whose employers did not pay into Social Security. At this time nearly 8.4 million people receive SSI. More than half of those recipients have been diagnosed with a mental disorder, and the majority of recipients are women (about 55%). These large numbers suggest either that as a nation we are losing our minds and / or that millions of Americans submit to being labeled mentally ill in order to receive the $536.75 per month that allows them access to (minimal) food and shelter in an economic climate that has not been friendly towards the 90% of us who are not born into wealth.

Disability and Punishment

The number of Americans receiving SSI went up at about the same rate as the number of Americans receiving welfare went down in the wake of the Personal Responsibility and Work Opportunity Reconciliation Act of 1996 (so-called “welfare reform”). Shifting people from welfare to SSI may be seen as a simple bookkeeping ploy, but by labeling certain people or groups as “needy” or “disabled,” we in fact define them as weak, as lacking in the attributes that we as a society admire. Indeed, given the negative qualities associated with need and weakness in American culture, disabled individuals are more likely than other Americans to become targets of correction and punishment.

According to a recent report by the National Center for Special Education Research forty-seven percent of young adults with disabilities report having been stopped by police for other-than-a-traffic violation and twenty-three percent report having been arrested. These rates are twice those for youth in the general population. Young adults with disabilities enter the juvenile correctional system at rates four to five times those of non-disabled youth. An estimated 37 percent of youth in state juvenile corrections facilities are eligible for special education and related services under IDEA, yet 16 percent of youth in short-term youth detention facilities, 52 percent of those in long-term youth corrections facilities, and 71 percent of those in adult corrections facilities were not enrolled in any kind of educational program during their incarceration. And the school to prison pipeline disproportionately picks up disabled youth of color.

Involvement with the juvenile justice system increases one’s probability for involvement with the adult correctional system. With the highest incarceration rate in the world, over seven million Americans are under some form of correctional supervision. Over half of the incarcerated population has a serious mental health issue and 40% suffer from chronic physical illness. Among women the numbers are even bleaker. Of the 47 formerly incarcerated Massachusetts women whom I have come to know over the past six years, 81% live with chronic physical illnesses including asthma, high blood pressure, heart disease, liver disease, Hepatitis B, Hepatitis C, HIV, chronic headaches, chronic pain, arthritis, disk degeneration, cancer and unresolved gynecological problems. Most live with more than one of these health challenges and more than half also have been identified as having learning disabilities. While unhealthy prison conditions coupled with the poor employment prospects facing ex-offenders partly explain the substandard health profile of Americans involved with the correctional system, the fact is that Americans entering prison are already sicker and poorer than other Americans.

Health, Wealth and Moral Worth

Americans are no more mean-spirited than people in the 146 countries that have ratified the United Nations Convention on the Rights of Persons with Disabilities. When I read books or see movies that describe cultures in which disabled people are mocked, teased or even killed, I am thankful for our sense of decency, for the Americans With Disabilities Act, for the accommodations (however deficient they may be) for disabled people. At the same time, however, I can’t help but notice that we are criminalizing disability. And that trend, while particularly dramatic during this age of mass incarceration, is deeply rooted in American culture. Since the time of the Puritans, Americans have identified good health (as well as wealth) with moral worth – with living an estimable life style, with working hard, “taking care of oneself,” doing the “right thing.”  This association between health and moral worth is neither natural nor universal; in many cultures people who struggle with pain, illness or disability are recognized for having greater spiritual gifts, for being closer to or chosen by God or for developing greater sensitivity to the suffering of others. In our culture people living with disabilities are recognized as having greater needs – and we do a great deal to meet those needs. But we have not yet recognized that while needs make one “needy,” rights give pride, autonomy and dignity.