Showing posts with label mental health. Show all posts
Showing posts with label mental health. Show all posts

Wednesday, October 8, 2014

Disability History Series - Part I

In honor of Disability Awareness Month, I would like to share with you the history of disability beginning with the housing of individuals with disabilities in institutions, referred to as institutionalization, and ending with what we see today in the 21st century. This trip we are taking is a difficult one, there is no doubt, but it is important to know where we came from so that we never go back there again. This series will be comprised of 4 parts:

Part I: Institutionalization, Eugenics and Deinstitutionalization 
Part II: Legislation and the Disconnect between Law and Life
Part III: Disability Awareness - who "they" are and the impacts disability has on individuals
Part IV: The Present and the Future

WARNING: This article talks about very abusive situations forced upon people with disabilities. Please be aware that it may be upsetting to some readers. The stories that follow are true and absolutely heart breaking. 



INSTITUTIONALIZATION

When we think of civil rights movements the plight of African-Americans, women's suffrage and gay rights immediately spring to mind. However, there is another group of individuals who have been fighting for their fundamental rights for even longer and who have not yet attained the respect of the general population. The history of the disabled population in the United States is a long and sad one.
Individuals who either were born with their disabilities or acquired them later in life from injury or disease were largely ignored and hidden away in institutions. What began as an attempt by a physician in the late nineteenth century to educate and train them quickly turned into a movement towards automatic institutionalization. A stigma never before felt by this population developed and they became the targets of chronic abuse by their families, the medical community, and society en masse. Not until the middle of the twentieth century, or thereabouts, were the disabled regarded important enough to be protected and supported. The civil rights movement of the disabled brought the atrocities and low living standards they bore to the forefront of society’s awareness. Through government legislation, improvements in medicine, journalistic exposés and a massive public outcry, deinstitutionalization was finally set in motion.
We will see, however, that often there is a lack of correlation between law rhetoric and the concrete application of policy. We see that legislation passed with the intent of assisting a whole class of people does not always work in the way it is expected to. Unintended consequences are not uncommon and are in fact quite the norm; what looks good on paper does not translate to affectability in real life. Furthermore, the way in which the U.S. political system is set up allows for loopholes to be built in to policies.
Disability awareness is important to understand how and why this population has suffered as a result of being segregated from the rest of society. An individual’s disability can have profoundly disastrous effects on a family and can lead to isolation, mental health problems that would otherwise not be present and abuse. Discrimination and stigmatization are the byproducts of a society based on the concept that everyone must be “normal”.
In order to make changes, we must first look back to see where things went wrong. We must then look at what has been done to change this and how we can continue defending the rights of those that may not have the ability to advocate for themselves, but deserve to have that protection just as much as non-disabled citizens.

THE BEGINNING

Dr. Samuel Gridley Howe was a very important historical figure in the mid-19th century. An abolitionist and physician, he also advocated for the blind and "feeble-minded". He believed in the idea that these individuals could be educated and that they could serve a valuable function within society. He started a small school in his father's home by gathering a handful of local youths who were blind. It proved successful and soon outgrew the walls of his family's home. In 1832, he established the Perkins School for the Blind in Massachusetts. He was its first superintendent and continued to be so, tirelessly, until his death. He is also seen as the precipitator of what is now known as the institutionalization movement that began in the 1850's. 
The industrialization of society in the early nineteenth century called for a more-educated population. Those who did not do well in the newly developed public education system were labeled "feeble-minded". They were ridiculed and typically experienced horrific living conditions. Dr. Howe was sensitive to their lives and headed a legislative commission in 1846 to study their situation. In all, over 700 "idiots" were identified, half of whom Dr. Howe felt could be helped with teachers and education geared towards their specific needs. He believed they could be taught self-care and to do simple labor. In 1849, his dream was realized and the Massachusetts School for Idiotic Children and Youth was established in Boston with the use of public funds. Over the next ten years, similar schools were established in several states. These schools were intended to have a family feel to them. The objective was to teach the students skills they could use, such as farm or household chores, to earn a living when they returned to their original communities.
Although institutionalization began as a humanitarian effort, it soon took a turn in another direction. The communities from which these individuals came were not accepting of them upon the completion of their schooling. The feebleminded were viewed as a social burden and “normal” society felt they were better off living at the schools permanently. Dr. Howe staunchly opposed permanent institutionalization. In his final report to the trustees of the Massachusetts School for Idiotic Children in 1874 when he retired, Howe warned of the permanent segregation of the "feebleminded," insisting that they should be integrated into society. "Even idiots have rights . . . !” he wrote. It would be another half-century before others began to believe in this vision. The school eventually came under direction of Walter Fernald who was a supporter of segregating "idiotic" children from the rest of society. The tragedy that unfolded resulting from the incarceration of feeble-minded, mentally retarded, disfigured or otherwise abnormal individuals was set in motion.

INSTITUTIONS

Our history is riddled with atrocities that the "hidden" population was subjected to. One such story begins with Fernald and the Massachusetts School. It was found that a large number of mentally impaired children being "treated" at this school actually scored in the normal range in their IQ tests (Walter E. Fernald State School). There were many reports of physical and sexual abuse which were not exclusive to this institution. Throughout the country, for the next fifty years, institutions initially intended to serve those that had a disability became overcrowded, horrific institutions referred to as "snake pits". States maintained these dilapidated monstrosities through "legislative penny-pinching" (Maisel, 1946) under the guise of public service when in actuality they cast aside the needs of those who needed the most assistance.
The abuse endured by this population stemmed from several causes. There was found to be severe understaffing and high turnover rates at all of the institutions investigated. The number of physicians, nurses and attendants available were far below the minimum state standards.  At a hospital in Warren, Pennsylvania, for example, the average daily patient load was twenty-three percent above what it was actually capable of handling (Maisel, 1946). There were four physicians – one for every 640 patients – when the official schedule called for 12 and any decent standard would require from 18 to 25 (Maisel, 1946).
The base pay of attendants, less than $900 a year, was far below the beginning pay rate of $1950 for prison guards even though the attendants' job was more dangerous and less pleasant (Maisel, 1946). Many doctors were incompetents, alcoholics and psychotics who could hold no position in well-run institutions where cure is the objective (Maisel, 1946). It was extremely rare to find a case of a doctor who was genuinely interested in curing or helping these patients; it was more of a case of keeping these patients "in line".
These factors, along with the stigma of being "feeble-minded", perpetuated the accepted practice of shutting away these people by any means necessary. Patients were confined to restraints for days and weeks at a time. These restraints consisted of thick leather handcuffs, locks and straps, and restraining sheets that were used to tie ankles, necks, and chests to beds, benches and chairs. In a high number of hospitals, chemical restraints were also used. Drugs that would normally only be prescribed and administered by doctors and nurses even in those times were being used haphazardly by untrained attendants. There was a reported case in a Pennsylvania state hospital of a man in his mid-20's who was over-sedated by attendants as their method of keeping him under control. He ultimately died because his sedation was not overseen by a doctor; rather, there was a "free hand" administration of drugs rampant in this particular hospital (Maisel, 1946).
Many hospitals did not properly feed their patients. The food served was likened to what could be found in garbage cans. At a New Jersey hospital an attendant noted that he had "seen cole-slaw salad thrown loose on the table, [and] the patients [were] expected to grab it as animals would…”(Maisel, 1946) There were many cases where the patients starved to death because of not receiving the minimum nourishment necessary to sustain life. Many could not feed themselves, and the shortage of workers meant residents often did not eat properly (Dugger, 1993).
Byberry Mental Hospital was an infamous institution known for its decrepit building conditions and treatment of patients. The wards were overcrowded to the point that the floors could not be seen through the rickety cots, while thousands more slept on the bare floors (Maisel, 1946). Hundreds of patients were not given a stitch of clothing and were forced to live in bare rooms with concrete floors. They were not given anything to occupy their days or even have chairs or beds to sit in. They lived in filth; the rooms smelled of urine and feces. Daylight was their only source of light and even that was filtered in through half-inch holes punched into steel-plated windows; cloudy days and nightfall meant hours and days of blackness with no relief. The cries of the insane echo[ed] unheard from the peeling plaster of the walls (Maisel, 1946).
Willowbrook State School was a New York state-supported school for children with mental retardation from the 1930's through 1987. An exposé in 1972 showed that it, too, was overcrowded, housing over 6,000 children when the mandated maximum was 4,000. It became known as a warehouse for New York City's mentally disabled children (Willowbrook State School). As many as sixty extremely disabled people were packed into one big locked room during the day, for years on end, with only a few attendants to supervise (Dugger, 1993). A close investigation showed patients were forced to live with inadequate sanitary facilities which virtually guaranteed the spreading of disease.
A researcher from New York University, Dr. Saul Krugman, proposed research that appeared promising in distinguishing between strains of Hepatitis and in developing a vaccine (DuBois). However, his study design involved feeding children local strains of live Hepatitis – deliberately infecting them (DuBois). The claim was, only children whose parents gave informed consent were used in the questionable study. However, critics asserted that the dangers of the experiment were downplayed to parents. Also, because the school was overcrowded, the only rooms available were in the experimental wing which left parents with no options other than to consent to subjecting their children to the study (DuBois). A public outcry brought the study to a halt but not until hundreds of non-infected children were made sick and were physically abused by members of the school's staff (DeBello, 2008). The grandmother of a patient there recounts seeing the condition of her four-year-old granddaughter who was admitted there, "You could smell her. Her little toes would be so chafed I had to pull them apart. I had to cut her hair short it was so matted." (Dugger, 1993)

EUGENICS

Eugenics is another despicable part of the history of the disabled community. This trend, which had its inception towards the late 1800’s, attempted to improve the quality of American citizens by implementing restrictive social policies that discouraged marriage and/or reproduction of individuals who were presumed to have inheritable undesirable traits. This movement sought to link social ills such as crime, prostitution, poverty, juvenile delinquency and promiscuity to people with cognitive disabilities (Snyder & Mitchell 624-625). It is also in this movement the term “feeblemindedness” was created. There was a tiered hierarchy of defectiveness developed in order to be able to categorize different levels of feeblemindedness. Idiots referred to individuals with a mental age of two years or less; imbeciles represented those with an arrested mentality of three to seven years; and morons referred to those attaining a mental age of no more than twelve years of age (Snyder & Mitchell 624-625).  
Using this pseudo-science as a rationale, prominent figures of the early twentieth century attempted to purify the American race by passing legislation legalizing compulsory sterilization of individuals believed to be "feeble-minded", epileptic, or otherwise “socially inadequate” individuals. Because this latter criterion was so broad the number of people who were at risk of falling into this category was almost infinite. Those who were institutionalized were almost guaranteed to be sterilized. Approximately 60,000 Americans were sterilized due to compulsory sterilization of institutionalized patients. Although it was a topic of interest throughout the world, the United States was among the less than a handful of countries most involved with this pseudo-science.  Between 1907 and 1937 thirty-two states required sterilization of various citizens viewed as undesirable: the mentally ill or handicapped, those convicted of sexual, drug, or alcohol crimes and others viewed as "degenerate"(McCarrick & Coutts, 2010).
The most infamous case of eugenic sterilization was that of young Carrie Buck. Shortly after her birth, her mother was placed in an institution for the feebleminded. Carrie was raised by foster parents and attended school until the sixth grade. At 17, she became pregnant. Her foster parents committed her to an institution on the grounds of feeblemindedness and promiscuity. She gave birth to a daughter who was adopted by her foster parents. The child died at the age of eight due to complications resulting from the measles. Soon after being committed, Carrie was picked as the first patient to undergo forced sterilization after the enactment of the Eugenical Sterilization Act in Virginia. Officials claimed that Carrie and her mother shared the hereditary traits of feeblemindedness and promiscuity therefore Carrie was the "probable potential parent of socially inadequate offspring." (Lombardo) In Buck v. Bell (1927) the Supreme Court of the United States upheld the sterilization law, with Justice Holmes infamously proclaiming in his opinion “Three generations of imbeciles are enough.” Carrie Buck, along with her daughter, Vivian, was sterilized.
But this “justice” was in actuality an abuse of government and law which by extension was abuse of “degenerate” citizens. Carrie was not promiscuous; she was raped by a nephew of her foster parents who sought to cover up the family embarrassment by institutionalizing her. At her trial, “experts” who had never even met with Carrie testified to her feeblemindedness and moral inadequacies (Lombardo). Not only was her defense attorney childhood friends with the prosecuting attorney, he was also a longtime supporter of sterilization and a founder of the colony to which she was committed (Lombardo). School report cards showed that Carrie had passed each year with very good marks and Vivian had made the honor roll (Pitzer, 2009). She and countless others were the victims of corrupt individuals who used their education and standing in society to abuse the judicial system in order to reach personal political ends.
Fortunately, we have seen the end of compulsive sterilization albeit more than a little late for the more than 65,000 people in the United States alone who were forced to endure this procedure. The Nazis’ cited the American eugenics ideology as their model behind their “ethnic cleansing”. The systematic murder of over 250,000 disabled people between 1939 and 1945 helped to finally dilute the fierce support for engineering a master human race here in the U.S.

DEINSTITUTIONALIZATION

SOCIAL MOVEMENT

The population of people with intellectual disabilities in public institutions peaked at 194,650 in 1967 (Community for All Tool Kit, 2004). Starting around the 1970’s, we began to see the deinstitutionalization of what is regarded as the disabled population. Between 1970 and 1984, 24 institutions in 12 states were closed, by 1988, 44 institutions in 20 states had been closed, and by 2000, there were 125 closures, or planned closures, in 37 states (Community for All Tool Kit, 2004). One reason for this new trend is that in the first half of the 1940’s, psychiatrists treating war veterans for combat-related mental illnesses began to realize that treatment for mental illnesses in civilians would be best treated outside traditional institutions (United States). Also, conscientious objectors during World War II refused to serve in the military based on religious and moral reasons. As alternatives, roughly two to three thousand were sent to work in institutions and asylums that were understaffed (Deinstitutionalization). They witnessed firsthand the abuse suffered by the institutionalized and began to log their experiences. If not for them, the reality of institutional life described earlier would likely not have been brought to the forefront of people’s awareness. In 1946, Life magazine printed an explosive account, “Bedlam 1946: Most U.S. Mental Hospitals are a Shame and a Disgrace”, that depicted the atrocities endured by the institutionalized. This particular exposé was based on photos and information gathered by the conscientious objectors and on the firsthand witnessing of the reporter Albert Q. Maisel.
At the same time the exposé was published, a public campaign to improve the living situations and overall care and treatment of people with mental illness was launched by the National Mental Health Foundation (NMHF), an extremely influential entity to the cause. Articles announcing prominent figures such as former Supreme Court Justice Owens and Eleanor Roosevelt as supporters of this movement were sent to newspapers across the nation (Taylor, 2003). Mrs. Roosevelt even met with the Conscientious Objectors personally and supported them through her national newspaper column, “My Day” (Taylor, 2003). Throughout the late 1940s and into the 1950s, NMHF conducted aggressive public awareness campaigns to change public attitudes toward people with mental illness (Taylor, 2003).
A social movement sprung to life. More and more exposés in the following years peeled back the layers of secrecy shrouding these abominations of our country’s history such as the one at Willowbrook Hospital by Geraldo Rivera. Furthermore, doctors and parents outraged over the treatment of patients in this institution began going public. They picketed the administration building, blocked traffic on the street and talked to reporters (Dugger, 1993). Communities were shocked to learn of the horrific environments the disabled were being forced to live in. Public sentiment towards the disabled began to change.

GOVERNMENT ACTION

The powerful philosophy of the Civil Rights Movement of the 1960’s opened up the eyes of the United States government. By this time important political figures, such as Senator Robert Kennedy and President John F. Kennedy, were formally denouncing the revolting circumstances of the nation’s asylums and called for federal policy changes in the treatment of those with mental illnesses. Rosemary Kennedy, one of the President’s sisters, was described as slow and possibly dyslexic and mentally retarded. Her family chose to place her in an institution. Perhaps this was the strongest motivator in the Kennedys’ fight for equal rights for the disabled. “The time has come for a great national effort,” stated President Kennedy (Kennedy, 1963).
In his first year in office, President Kennedy established the President’s Panel on Mental Retardation. Six task forces were created and charged with conducting an “intensive search for solutions” to the problems experienced by people with mental retardation (Minnesota Governor). The 1962 report of the Panel on Mental Retardation heralded the beginning of federal involvement and fiscal aid to states (Minnesota Governor). The report contained 112 recommendations under the headings of research…a new legal and social concept of mental retardation, increased educational opportunities to learn about mental retardation, and public education and information programs (Minnesota Governor).
The Community Mental Health Act of 1963 (CMHA) was legislation passed by Kennedy’s administration which played a large part in the deinstitutionalization trend. The CMHA provided grants to states for the establishment of local mental health centers, under the overview of the National Institute of Mental Health (Community Mental Health Act). In 1965, an Intermediate Care Facility (ICF) program was set up for the elderly and disabled adults under the Social Security Act (Lakin, Larson, Salmi, Scott, 2009).
Three outcomes were intended by proponents of this legislation: 1) to provide substantial federal incentives for upgrading the physical environment and the quality of care and habilitation being provided in large public ID/DD facilities; 2) to neutralize incentives for states to place persons with ID/DD in nonstate nursing homes and/or to certify their large state facilities as SNFs; and 3) to provide a program for care and habilitation (“active treatment”) specifically focused on the needs of persons with ID/DD rather than upon medical care. Although the population of state facilities continued to decrease on a yearly basis states overwhelmingly certified their public institutions to participate in the ICF program (Lakin et al., 2009).
Proponents of community based services used statistics generated by the ICF program to propel their argument. They argued that the program provided an incentive to maintain large state facilities by offering federal funding. Funds that could have been diverted to develop and support community services and programs were instead used to renovate large facilities in order to receive these federal funds. This model also promoted a single standard for care for ICF residents regardless of the nature of their disability or degree of capacity for independence.
Section 2176 of the Omnibus Budget Reconciliation Act (OBRA) of 1981 created the Medicaid Home and Community-Based Services (HCBS) waiver program. This was passed in order to provide non-institutional services to individuals who are disabled that were in or at risk of being placed in institutions. However, many in the advocacy field began to get a sense that there were many more people with ID/DD living in nursing homes than were appropriately served in them (Lakin et al., 2009). Congress attempted to rectify the situation by passing the OBRA of 1987 which restricted the criteria for patients permitted to enter a Medicaid approved nursing facility to ensure that only individuals needing the nursing and medical services offered would be admitted.
The OBRA of 1986 proved to do very little as the barrage of court cases of the 1990’s suing facilities in violation proved. There have been court cases over the course of the last half century that has given rights to those who are disabled and their families. There have also been cases in which people or entities have been found guilty of discrimination based on disability even after legislation has been passed in order to end this type of discrimination.
A landmark example is the Olmstead decision (Olmstead v. L.C and E.W). In 1999, two women, institutionalized by the state of Georgia, fought for their right to live in their own home in their community without losing government benefits. Georgia claimed that by allowing these women to move into the community, it would lead to the closing of state-run facilities and disrupt government funding to individuals in these facilities. However, the Supreme Court found that forcing individuals to remain in institutions in cases where their attending physicians felt it was unnecessary violated their rights as written in Title II of the ADA. The 'integration mandate' of the Americans with Disabilities Act requires public agencies to provide services "in the most integrated setting appropriate to the needs of qualified individuals with disabilities." (Supreme Court Upholds ADA 'Integration Mandate' in Olmstead decision) The Court noted that confinement in an institution severely diminishes the everyday life activities of individuals – including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment. (United States, 2000) It further found that it was a violation of a person’s rights as written in Title II of the ADA to force them to be institutionalized in order to receive their Medicaid benefits. Medicaid is the largest health insurance program used by low-income persons with disabilities. Approximately twenty percent of the American population with severe disabilities has no other health coverage. This means that Medicaid serves over five million consumers who have no other way of covering their life-sustaining needs. This ruling increased the momentum of deinstitutionalization and began a trend towards home and community-based services (HCBS) (Stroman, 2003).
However, it was apparent that not enough had been done. Society made disabled people "invisible by shutting them away in segregated facilities" Rep. George Miller (D.-Calif.) said in a Congressional debate on the ADA bill in 1989. (Supreme Court Upholds ADA 'Integration Mandate' in Olmstead Decision) Out of sight, out of mind had been a long time standard for how to “deal with” individuals with mental and physical disabilities. Medicaid has been referred to having an “institutional bias” because it has historically preferred nursing-home facilities, such as ICF’s, to community-based long term care (LTC).  In 2005, Medicaid paid $101 billion for LTC services, the majority of which was for institutional care (63 percent). (Coffey, 2008) In 2008, nationally, HCBS recipients made up 84.9 percent of the total HCBS and ICF recipient population but used only 65.1 percent of total HCBS and ICF-MR expenditures (Lakin et al., 2009). The per-person expenditures for recipients of HCBS services were lower in every state than those for ICF recipients (Lakin et al., 2009).
The Deficit Reduction Act of 2005 (DRA) helped to further deinstitutionalization by making very significant changes to state Medicaid coverage of long-term care services. States now have the option to provide home and community based services (HCBS) as a state plan benefit (Coffey, 2008).
States can provide HCBS benefits in three ways:
·         An optional 1915(c) HCBS waiver
·         A mandatory home health benefit
·         An optional state plan personal care services benefit
Since its inception, the number of people requesting HCBS has steadily risen. In 2006, 280,176 individuals were on a waiting list for HCBS services, up from 206,427 individuals in 2004 (Crowley & Risa, 2003).
            The DRA also enacted the Money Follows the Person program (MFP) which is a program intended to help individuals currently receiving services in institutions transition into their communities and allow them to self-direct their care plan. The government provides a cash incentive for states to expand their HCBS program funding. The Medicaid dollars will “follow the person” so that these individuals will be able to retain their Medicaid coverage and have it delivered through HCBS programs. It already matched at least half of state Medicaid expenses. Under MFP, states will receive an enhanced match for the HCBS services provided for the first twelve months to each individual transitioned under the program (Coffey, 2008).
 A state plan option allows for states to provide HCBS waiver services without needing to get a waiver for individuals with disabilities up to 150 percent of the poverty level. As promising as these options appear to be, they are very narrow in scope and do not allow for all of those who wish to live in their communities to do so. Furthermore, few states have taken up the state plan option to date (Crowley & Risa, 2003).
 However, there is still an institutional bias in the Medicaid system. What this means is that the way Medicaid has been set up promotes the institutionalization of individuals as opposed to home and community based services (HCBS). In June 2008 an estimated 51.8 percent of HCBS recipients received services in settings other than the home of natural or adoptive family members (Lakin et al., 2009). While there has been a trend for wanting deinstitutionalization the numbers show that a large number of disabled individuals have no choice but to enter an institution. In 2005, 59 percent of Medicaid spending on long-term care and support services was spent on institutions whereas the national average of the same type of spending on home and community based services was only 37 percent (Crowley & Risa, 2003).

There is currently a large movement towards person-centered planning, where the individual chooses what to do, where to go and who to be with. We will discuss this further in Part IV. Next week, Part II, we will look at legislation that has been passed in the areas of accessibility and education. 



Photo credits: 
theladdschool.com
http://www.exceptionalcatholicmn.com/we-remember.html

Sources:
DeBello, Vanessa. "History." Willowbrook State School – A Voice Behind the Wall. Blogspot,
      03 October 2008. Web. 4 May 2011. <http://willowbrookstateschool.blogspot.com/2008/10/

DuBois, James. "Hepatitis Studies at the Willowbrook State School for Children with Mental
      Retardation." Ethics in Mental Health Research. Saint Louis University and Missouri
      Institute of Mental Health, n.d. Web. 20 May 2010.
      <http://www.emhr.net/download.php?id=4>.

Dugger, Celia. "Big Day for Ex-Residents Of Center for the Retarded." New York Times (1993):
      n. pag. Web. 14 October 2010. <http://www.nytimes.com/1993/03/12/nyregion/big-day-for-

Maisel, Albert. "Bedlam 1946: Most U.S. Mental Hospitals are a Shame and a Disgrace." Time
      Life Magazine. 6 May 1946: Print.

Pfeiffer, David. "Samuel Gridley Howe and 'Schools for the Feeble-minded'." Ragged Edge
      Online. Advocado Press, 2003. Web. 4 September 2010.

"Samuel Gridley Howe." FamousAmericans.net. Appleton's Cyclopedia of American Biography,
      2001. Web. 14 September 2010. http://www.famousamericans.net/samuelgridleyhowe/.

“Willowbrook State School.” In Wikipedia. Retrieved 5 Oct. 2010. http://en.wikipedia.org/wiki/

Friday, January 17, 2014

Welcome To Holland

This was written by Emily Perl Kingsley in 1987. There is no better way to describe the experience of becoming the parent to a child with special needs:

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......


When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Wednesday, November 6, 2013

Shooting at LAX - How YOU could have prevented it

KILLING AT THE AIRPORT
In case some of you haven’t heard, there was a shooting at LAX, a major airport in California, USA.  Paul Ciancia walked into the airport and with a motorcycle helmet on started shooting an assault rifle, killing TSA officer Geraldo Hernandez and wounding two other officers. He was later shot by police and is currently hospitalized but unable to speak.
Now that you’ve gotten some background, I want to tell you that the point of this writing is not to report to you about yet another public shooting but to WAKE YOU UP! Yes, dear reader, I am talking to YOU! There were so many clues leading up to this particular tragedy that it leaves me with my mouth agape and fully enraged wondering why didn’t somebody DO SOMETHING? He sent rambling texts to several friends, people who knew him well, people who say they thought he was acting “weird” and out of his normal state. And it went on for an extended period of time. He became introverted, quiet and anti-social. He became suspicious of governmental agencies and developed an anger for, specifically, the TSA. He talked about something bad about to happen; at one point, he texted several different people at one in the morning with messages saying he had something very important to tell them and asking them to call him back as soon as possible; he asked all his roommates at different points to give him a ride to the airport so he can get back home to New Jersey but didn’t have a specific flight to get on. It goes on.

SOMEBOD(IES) DROPPED THE BALL
 So, I ask his roommates and friends: Why didn’t you ask him if something was wrong? Why didn’t you ask him if he needed help? Why didn’t you ask him to dinner, to drinks, to a game, something, anything, to feel him out?? And if some of you did, and he denied there being a problem, why didn’t you try harder? All of them are now saying, “I never thought he could do something like this.” Really? Well, guess what? He could and he did. Just before the shooting, his family in New Jersey called the police in their area to ask they contact the police in Los Angeles to do a welfare check after receiving a series of odd texts. They were concerned that he was getting ready to hurt himself. Unfortunately, the police arrived about 45 minutes too late. A roommate had already driven him to LAX and the shooting had already commenced.
Now two families are suffering tragic losses. The family of the shooter is suffering with shock and disbelief and grief. They will undoubtedly be judged for their son’s actions for a time to come. Officer Hernandez’s family is suffering greatly as well. His unnecessary and untimely death will impact every family member for the rest of their lives. His is the first death in the line of fire of a TSA officer since its inception in 2001.

STOP THE KILLINGS
Now I want you to THINK. Think about the people in your lives. Your friends, your sisters, brothers, uncles, cousins, your co-workers, your Facebook contacts. Is anybody standing out in your mind because they’ve changed? Has anyone stopped interacting as much as they used to online or stopped showing up at social outings they were always a part of? Does anyone who used to be talkative now barely speak? Has someone become withdrawn, seem sad or mad all the time or talk about odd topics you’ve never heard them talk about before?
Invite them to lunch. Stop by their home with bagels and a box of joe. Ask their immediate family members or other loved ones if they’ve noticed the same thing. Follow your instincts – if your gut is telling you something is off, then it IS. Don’t wait for somebody else to do something. BE THAT SOMEBODY. You could save a life! After the LAX shooting – and countless others in very recent history – that is an unfortunate understatement.

BE THAT SOMEBODY


Monday, February 4, 2013

Is inclusion a good thing?

INSERTION VS. INCLUSION
           Inclusion is a murky word. Proponents of inclusion want to have classrooms, social activities and workplaces where there are disabled and non-disabled individuals getting together, commiserating, cooperating…It scares the crap out of me. Why? Because too many people believe that insertion = inclusion and frankly my friends, it does not.
Let us ask ourselves: have the disabled been integrated into society since the “purging” of the state hospitals (deinstitutionalization) began in the 1970’s? By definition, inclusion is “the addition of somebody or something to a group or mixture” (Encarta dictionary). However, inclusion can be nothing more than a simple insertion of an individual into a setting where they are not truly accepted but are merely tolerated. A person can be tolerated without being recognized. Think of that kid that sits alone at the lunch table, not being picked on but not being played with, either. Tolerated but not recognized.
They can be admitted without being incorporated. A student with Down syndrome has a right to be integrated into a non-specialized public school but doesn’t his lack of friends or any after-school programs geared towards his socialization needs and interests prove that inclusion does not equal acceptance? In this case, we are not just talking about his acceptance by his peers; the teachers, administrators, coaches, mentors and the school system as a whole is in question.
Now, “federal officials are telling school districts thatthey must offer students with disabilities equal access to school sports.” Schools will be required to make reasonable accommodations to include students with disabilities. If doing so changes the nature of the game drastically then new programs that have “comparable standing as mainstream programs” must be created.

FORCED INSERTION
This worries me some. There are some unintended consequences I can foresee here. Forcing teachers and coaches to make a spot for a kid with a disability in their “normal” routine they’ve been accustomed to can be traumatic for all involved: the teacher/coach, their current students, and the kid being inserted into the team.
Once, when I was working as a hair designer in my previous life, before inclusion went from being a notion to an action that is actively pursued, a client who was a middle school teacher was venting to her colorist how she was being forced to have special needs kids in her classroom. She commented on how difficult it made her life now that she had to develop a lesson plan for a kid “like that” and still have to be able to teach the “normal” kids. The venting went on for a while and I eavesdropped the whole time. This clearly shows that inclusion must be done in a thoughtful, meaningful way. We can’t just tell a school, “You have four kids with physical disabilities and none of them are on sports teams. Stick them in somewhere by next week.” Can you imagine the resentment towards those four kids felt by the coaches and the other students because of a forced insertion? How will that resentment play out? Ignoring them? Dirty looks? Hurtful words? Physical harm? I know that not all teachers, coaches & students will feel this way but is this a risk you’re willing to take with your kid? Not I! And yes, I know, nobody is saying that schools will have a week’s time to make the necessary changes. In fact, there’s no deadline for schools to comply which seems like a built-in loophole to me. But there is ALWAYS resistance when institutions that have not complied with ADA regulations for the entire time they’ve been in existence is told that they must make changes. Just take a look at the whole pool-lift debacle.
Another very real concern I foresee is: how can instructors & teachers who have never had any experience with special needs students be expected to include these students without any formal training?? Not everybody can be a special needs instructor. Just because someone is “good with kids” and gets good results in their classroom or on the field does not automatically ensure that they will know what to do when they’re presented with a whole new set of….problems, shall we say? A kid with autism who self-stims, for example, can be hard to deal with when you’re used to things like Tommy taking Sandy’s pencil. Forcing a teacher to take on special needs kids because of an “inclusion doctrine” with little or no training is detrimental to the students and teacher. I have not read anything, anywhere, which talks about appropriate training for these instructors who now have to figure out ways to truly include new athletes.
And of course we will have those ridiculous comments about how enforcing these regulations will only serve to raise taxes and school districts will become even tighter with their budgets. Oh, and now, regular programs will suffer because they will have to be cut in order to funnel cash to creating new programs for those other kids. Do you know what Title IX is? It made huge positive changes for women in sports. It demanded equal sports programs for women as for men and it led to a large increase of female participation in sports. But of course, there were those idiots who found a way to make it a negative by saying men’s sports had to be cut because of Title IX. AND??? Does that mean that women shouldn’t have the same opportunities because now the men have slightly less? Why should it be any different for people who have disabilities?

MAKING CHANGES
I started off by saying that inclusion scares the crap out of me but I do believe it is necessary and vital to a healthy society, not only for those who are disabled but also for the walkers, talkers & others who are not disabled. Access to school athletics, whether at the elementary, high school or collegiate level is A RIGHT, not a privilege! Too many times people with disabilities are seen as pity-cases. But guess what, people? There are actually people with disabilities who can do things society believes they cannot. Have you heard of Mitch Ryan? Yeah.
 So what is the answer? How can we stamp out stigmas and eradicate discrimination? We can protest and march against the unfair and unequal treatment of those with disabilities. However, to date, research suggests that protests do not promote positive attitudes or increase knowledge about disabilities (Westerholm, et al., 1506).
Education is the main conduit to a better understanding of the life of a person who happens to have a disability. The sharing of correct information will assist in the reduction of stigmas attached to individuals who are physically, mentally and developmentally disabled. In the case of mental illness, for example, after-care information is of particular importance because studies have shown that people who only receive information regarding psychological symptoms increased their negative attitudes about the illness (Westerholm, et al., 1506).
There needs to be an attitudinal shift when considering disability rights. Rather than charity it is imperative there be a focus on civil rights; rather than pity, a belief in a wide range of human possibilities is crucial. A disastrous consequence to the stigmatization of the disabled population is the tendency for the disabled to avoid contact with the able-bodied and, conversely, the able-bodied to ostracize the disabled. I have a firm belief that the best approach to reducing stigmatization and discrimination is to increase meaningful personal contact between folks who have disabilities and those who do not, i.e. full inclusion with appropriate training, not just insertion. For the disabled, this dynamic can help foster a sense of trust towards the non-disabled which may increase their willingness to involve themselves with social interactions they may have previously been resistant to. The development of this dynamic can provide for those who are not disabled important information regarding the positive and negative impacts of mainstream society on those who live with disabilities.
Imagine a world where people with disabilities aren’t fearful of the non-disabled and the non-disabled are not uncomfortable around people who are disabled. That’s the world that I want to live in.

THINK ABOUT THIS
Reverend Martin Luther King, Jr. was an American dedicated to the realization of the equal rights promised to all African-Americans in this country. In his famous speech he described the state of being of African-Americans a century after they were to have been emancipated:

“One hundred years later, the Negro lives on a lonely island of poverty in the midst of a vast ocean of material prosperity. One hundred years later, the Negro is still languished in the corners of American society and finds himself an exile in his own land.”

What he proclaimed was a concept that should have been obvious without being stated – that every person has the right to be treated equally and fairly.   We can see very strong similarities between the tragedies that the African-Americans and the disabled citizens of this country have been forced to endure. Must we wait one hundred years after the beginning of deinstitutionalization before the civil rights of the disabled are truly recognized?


Citation:
Westerholm, Robert, Laura Radak, Christopher Keys, and David Henry. "Stigma." Encyclopedia
        of Disability. 4. Thousand Oaks, CA: Sage Publications, 2006. Print.

Edited for broken link




Sunday, December 23, 2012

Cops beat man with Down Syndrome


Unconstitutional Use of Force

I recently posted on Google+ and Facebook about how the US and the city of Portland, Oregon have have jointly filed in federal court a proposed court enforceable settlement agreement to remedy constitutional claims that the Portland Police Bureau (PPB) engages in a pattern or practice of unconstitutional uses of force in response to “low-level offenses” against persons with actual or perceived mental illness.

I guess it’s time to do the same in Vista, CA. A deputy pepper-sprayed, beat with a baton and detained a man (after throwing him to the ground with the assistance of another deputy who showed up) in handcuffs who has Down Syndrome. There were witnesses in the area shouting that he had Down Syndrome but that didn’t slow the cops down from beating him and leaving many contusions, scrapes and bruises on him. He was transported to the hospital (still in cuffs I might add) and allowed to go home with his family. The following day, police officers showed up at the family’s place of business and informed them they would be dropping the citation they had against him (they claimed he was acting “suspicious”; he was walking the 5 minute walk to work) and offered them a turkey with stuffing for their Christmas meal as an apology. Yep. A turkey dinner. 




Now, I am not claiming that if a person is being aggressive or a danger to others or themselves, they should not be handcuffed or sprayed just because they have down syndrome or any other form of developmental disability. And again I say, I'm not anti-cop but there is definitely a culture of beat 'em, taze 'em. The fact that the U.S., not a local town or county, has filed against a particular city's police bureau (Portland, OR) indicates there have been egregious violent acts against a vulnerable segment of our population: the mentally ill. This story is just one account that made it into mainstream media. And hardly even that – I saw this only on CNN.


Some questions to ponder:

How about some education for those who are supposed to protect us so that those among us don't need protection from them?
How about instead of locking people up and throwing away the key, we get them some medical support? 
Would you think that would be a better idea if you knew it decreases recidivism? 
How about if it reduced the level of violence of the repeat offenders?

Read about how changing our current prison system could possibly change our society as a whole here.



Tuesday, November 6, 2012

When Does A Person Have A Right To Die?


A fellow blogger wrote about physician-assisted suicide and it got me thinking. 

RIGHT TO DIE/CHOOSE TO REFUSE

Should a person have a right to choose death when faced with a terminal illness that will kill them slowly and painfully?
Imagine this scenario: Your doctor diagnoses you with a terminal case of cancer that would have you under the ground within 6 months without treatment. You're offered a treatment that may extend your life by another 6 months but it produces nasty side effects. So, technically, you will be alive but will you be living? What will your quality of life be like? You can say, “Thanks, but no thanks” and let the cancer kill you slowly. This refusal of treatment would be AMA - against medical advice - but you can "choose to refuse".
What if there was another option? Why do you have to suffer as you die?


DEATH WITH DIGNITY


There are some who believe we should not have to suffer; that we should have the choice of a doctor-assisted suicide. I am one of those people.
Of course there have to be safeguards put in place. Massachusetts is voting on a bill today (November 6, 2012), Ballot Initiative (Number 2) which is referred to as "Death with Dignity."  Here’s some of what it states:

·         A licensed physician can prescribe a lethal dose of medication to a terminally ill adult patient
·         This patient is an adult who has a prognosis of dying within the next 6 months
·         This patient must be deemed mentally competent
·         The request for the script must be made orally twice & witnessed in written form
·         15 days must fall between the two oral requests
·         The mental capacity of the patient & terminal diagnosis must be verified by a second physician

This does not cover every detail of the bill but it’s the meat of it. It makes sense.


WHEN RIGHT TO DIE IS WRONG

Now imagine this scenario: an elderly man who is basically healthy but whose body is slowing down is becoming depressed. For one, he is unable to be independent as he has been for his entire life due to his advanced age. For another, he DOES have a medical condition that causes him to aspirate anything he eats and drinks. He has been complaining about feeling like food is getting stuck in his throat/chest area to his wife (who controls the money and whether or not he get to go see the doctor) and his children but everyone assumes he is faking it for attention or just being a pain in the ass.

He develops habits in attempts to clear his throat that have him in the bathroom, hacking & coughing for up to 2 hours at a time that leave him sweaty and weak. The family is annoyed by his eccentric behavior rather than taking him to see a specialist. This goes on and on; it progressively gets worse for years.
His quality of life suffers dramatically. He can’t eat or drink comfortably and nobody will listen to him. He becomes very depressed and angry. The family reacts with anger and annoyance. He reacts with more anger and crying spells. He regularly wishes he could just die. He states this out loud. The family begins to believe he should be allowed this right and when a feeding tube is recommended by a general physician, they don’t want to put one in because they want to “respect his wishes” of dying. A death that would be slow and painful; a death caused strictly by starvation.

Here is a case where a person should NOT be allowed to kill themselves. Isn’t it apparent that the old man’s wish for death is based on his severe depression? He is not terminally ill nor does he have a debilitating disease that requires extensive medical intervention. He was aspirating & his cries for help went ignored. This led to a piss-poor quality of life which led to depression which led to a desire to die.

Depression is not a valid reason in the 
"Right to Die" argument



Thursday, August 30, 2012

Crazy People in Jail - Mental Health and Criminal Justice


I’m glad that title got your attention. Now that you’re here…

JAIL
I’m watching “Jail” and they just arrested this girl for failure to show up to court on a prostitution charge. She barely looks 18 and it was obvious to me (and to the arresting officer, thank God) that she has some kind of mental issue. This just made me think about all the individuals with mental diseases who don’t have medical coverage and can’t afford the proper medical attention and/or medication they need. Some of these people go on to commit violent crimes that, had they been on the proper medication or under the supervision of a physician, they never would have committed. There are others (possibly like this girl I just saw on TV) who are influenced and abused by people who only have their own interest in mind and couldn’t care any less about who they are taking advantage of.
As if that’s not sad enough, what happens after these people are arrested is even sadder. They are thrown in jail without proper medical attention and are expected to be able to function and follow orders. When you have a mental disease, you cannot be scared into or forced to follow orders. It is the disease that caused you to commit the harm in the first place! What makes you think they can surmise that they should listen to a corrections officer if they can't figure out that shouldn't have killed/robbed/attacked the victim? If a person has cancer or a broken arm, they are taken to see a medical professional to fix the problem, right? So if a person has a mental disease doesn’t logic dictate that they should receive treatment as well? Yes… I know. You’re thinking that there are so many people who claim to have a mental problem just to try to get out of their situation. But there are folks with a HISTORY of mental illness who don’t get what they should and DO have a right to!

MENTAL HEALTH PREVALENCE
According to the School of Social Work at the University of Washington, about 1 in 4 adults experience a diagnosable mental disorder in a given year. This can be anything from depression to schizophrenia, for example. About 1 in 17 people experience a serious mental illness. Just under half of the people who experience a mental disorder actually experience 2 or more.
Please understand, I’m not saying that people who have murdered or raped or carjacked or whatever should get off light. No! What I’m saying is, let’s address the bigger issue here. Mental health courts are designed to take a different approach with defendants who have mental health issues. They typically have a designated judge and possibly a designated prosecutor & defense attorney. Their purpose is to work together to come up with a treatment plan that will address the specific needs of the defendant while still protecting the public.

CAN WE CHANGE OUR CURRENT SYSTEM?
A study was done to see whether or not this process would reduce recidivism and violent offenses in individuals who were arrested for a crime and found to have a mental disease.* What it showed was that the likelihood of released participants of mental health court being charged with any new crimes was 26% lower than that of individuals who did not receive treatment. And the likelihood of these treated individuals to be charged with a violent crime: 55% lower than individuals who were not treated!!
What does this tell us? Recidivism would be greatly reduced if we didn’t just lock people up then spit them back out in the street when they have finished serving their sentence. Not only that but it’s obvious that the number of crimes committed by these individuals, especially those of the violent kind, would be greatly reduced if they are properly treated!
If you like to look at things from the “what would I get out of this” angle, well, besides the fact that the chances of you becoming the victim of a crime committed by someone with a mental illness will shrink, there will be less people thrown in jail whose livelihood you sustain through your taxes!

* Dale E. McNiel & Renée L. Binder, Effectiveness of a Mental Health Court in Reducing Criminal Recidivism and Violence, The American Journal of Psychiatry (September 1, 2007). http://ajp.psychiatryonline.org/article.aspx?articleid=98922

Friday, June 8, 2012

A Little Girl's Thoughts & Dreams

I've often wondered what my daughter's thoughts look like. You can read a little about her here. Are they pictures strung together like the symbols on her DynaVox (her communication device that's something like a tablet but a little bigger and works similarly to web pages)? Or are they flashes of images just randomly popping up, not necessarily having anything to do with each other? I wonder if she jumps from thought to thought, like she jumps from one thing to another totally unrelated random thing in waking life. For example, using her DynaVox, she will say "snack cart" but not elaborate so I'll have no idea what she was just thinking about. Next thing she does is play a song off her MP3 list, so I guess she wanted to listen to music. Then she'll say she wants to play but then the computer will catch her eye and she remembers she already asked to go on the computer. Or maybe her thoughts are like a slide show. Or just sight words.



I also think a lot about her dreams. There was only once in her almost 16 years that she woke up screaming and crying really hard and I thought maybe she had had a nightmare but of course I have no way of confirming that. When she goes to sleep I'll say, "sweet dreams" and she smiles. I've asked her in the mornings if she had lots of sweet dreams and she always smiles and nods her head yes but I wonder: did she? Does she even know what dreams are? I mean, EVERYONE has dreams, right? Isn't that what they say? So I guess it's safe to assume that she does too.


Photo is from 2003

I can't help but wonder if in her dreams she can walk and talk. I was reading something about a teenage girl who has autism. She is non-verbal too but she spells and has found her voice through writing. Someone asked her if she is autistic in her dreams and she answered that sometimes she is and sometimes she isn't. When my daughter was about 5 or so, I had a dream that she was laying on the floor, floppy, because she had no tone to her body. Then just all of a sudden, she got herself up. She just stood up. It was so realistic because in my dream we were in the house we were living in at the time and everything looked exactly how it did in real life. I woke up right then and
                  I.
                    Was.
                        Devastated.
For that split second, I KNEW what it felt like to have a regular ol' kid and for the second time in her life it was yanked away from me. You know that image of someone standing on a rug and somebody else sneaking up behind him and pulling it out from underneath him? Yeah, that's what waking up from that dream felt like. 


I wonder if she has dreams like these. If she does, I would have to say that they don't devastate her the way mine do to me because she is always smiling when she wakes up. I mean, ALWAYS smiling. I think she knows a secret and just hasn't shared it yet. I can't wait to find out what it is!