An incredibly eloquent submission by Joe Gutstein.
Let’s imagine for a moment that you are long into the public mental health system. You have been in the hospital multiple times, in a couple of partial hospitalization programs, and have spent years in sheltered workshops and day programs. You’ve received the Prophecy of Doom, “Too sick for too long to get any better.” You’ve heard plenty of statements beginning with “You can’t, You won’t, and You will never.” You’ve been told endlessly that something is intrinsically (genetically) wrong with you and the only thing that will truly save you is a medication yet to be discovered. You’ve also been told that the most important thing you can do is get on SSI or SSDI in light of the prolonged and persistent nature of your illness. You’ve been told to engage in meaningful activities generally limited to walking, listening to music, and reading. You’ve been told countless times to avoid any stressors which might be associated with more rewarding activities and these stressors will doubtless lead to yet another hospitalization. You’ve been told so many things.
You’ve lived through several successive Eras: Psychosocial Rehabilitation, Evidence Based Practices, Transformation, Recovery and now Recovery and Wellness but the only thing that actually changed was your medication. You’ve been referred to as a patient, a recipient, a client, a consumer, a prosumer, a self advocate and now a “person with ….” but everything is the same at the hospitals, the sheltered workshops, the partial hospitalization programs and the very day program you now attend. You are now told pursuant to the Recovery model that you are suddenly empowered but what evidences your empowerment? What is it in your life that is now different? When did you last hold a meaningful job, live in decent housing, go on a date, attend to a party which wasn’t held at 3 pm or have friends over to your place? Has your health improved? Has your circle of friends and acquaintances changed? Has your income increased to provide for more options? What activities do you now engage in which you wouldn’t have before you were empowered?
Are you empowered? Not really, nothing has changed in your existence. What you do have is a familiar long standing delusion in which you are empowered. You imagine, it is part of your symptomatology, that you can provide anyone anything and everything with a CGI script. This is an empowering belief within your disempowering reality and among all the other folks at the day program it gives you a unique identity, a unique story where being unique in other areas might not be highly regarded. Fortunately, there is no impact on your role as a person in the day program unless you chatter away about it. (No more so than your peer who believes he is being watched by friends on another planet. After all, he is no longer alone all the time. Someone is watching over him where no one else might otherwise care about him.)
What is going to replace this powerful delusion and that which accrues to you by virtue of it? Let’s consider your options and the system of supports and services which will assist you in replacing it. Knowing that it is best not to ask for anything specific which might fall beyond the groups found at the day program, You say, “I want to be empowered.” The reply is “Of course, we can help you with this. Did you know that the day program has an Empowerment Group?” (You knew there was an Empowerment Group.) Consequently, you are signed up for the day program’s Empowerment Group. It meets in the same room as the Socialization Group which was going to help you get a date on Saturday night and the Pre-Vocational Group which was going to help you get a meaningful job. But you know the folks in the Empowerment Group. Not a one has become empowered. (The group meets weekly and all the chairs are in a therapeutic arrangement. There are handouts and members of the group so inclined read aloud from the handouts.)
So in the final analysis, you have the delusion and the Empowerment Group. The delusion is empowering but the Empowerment Group isn’t. Sadly, no one asked you the right question in the Era of Wellness & Recovery. Now – for the first time – the very question he or she would want to be asked in the same circumstances is being asked, “What do you need to thrive?” What is it that would lead you to hope for a life where the delusion has no value and might be patently detrimental. And for once you truly know that your answer shouldn’t be limited to something that happens in another group but involves real skills, fostered and facilitated in the real world with services and supports which promote a life. And just maybe you’ll now believe in the possibility of that date on Saturday night and a meaningful job for this new reality is more satisfying and empowering then any long held delusion.
One of the biggest challenges I’ve had in the 10 years I’ve been writing on the subject of mental illness is the evolving use of language around disabilities. Sometimes I’ve been relieved by change; other times I’ve been frustrated. I recently had the opportunity to start thinking about this again because I accidentally let a writer use the phrase “wheelchair-bound” in an article I edited. Afterward, the subject of the article objected, and I felt terrible. I wasn’t hip to that particular change, but in the future I won’t use it again.
Often, the lack of a consensus stymies writers and members of the media. In my case, I’m sort of okay if you call me “bipolar,” but there are many other people who think that’s terrible — and that you should only say “person with bipolar disorder” or “person who has been diagnosed with bipolar disorder.” As a writer concerned with rhythm and clarity, I have to object to the latter for myself. Yes, I’ve been diagnosed that way, but given that I concur with the diagnosis, I’m comfortable saying “I have bipolar disorder.” A lot of people object to “a person who suffers from bipolar disorder,” but I remember just a couple years ago when that was absolutely the most appropriate language.
One thing I feel we’ve mostly agreed upon: To call a person schizophrenic is really out of date. As in: “I think he’s schizophrenic.” In clinical contexts that emphasize recovery, people definitely say, “I think he has schizophrenia,” if not something more progressive, like the examples above. There’s something historically uncomfortable about the word “schizophrenic” that hasn’t yet accrued to “bipolar,” if only because the illness (oops) only recently shifted from “manic-depression.”
And now to that oops — some people no longer like to say “mental illness.” Some prefer “brain disorders” but others like to go in the opposite direction and say, well, I’m not even sure anymore. Because I subscribe to some of the horrors that many people rail against (like that my symptoms are part of an illness; that medication can work; that not all of the DSM-IV isn’t balderdash), my language may, at times, be less People First-ian than that of others.
For example, I wear two hearing aids and have been, for some years … hearing-impaired? Suffering from hearing loss … ? Partially deaf .. ? (I am not, however, Deaf. That I know for sure.) My friend and I talk about this sometimes because she is partially deaf (with much more impairment than I have) and has been so since childhood. But even she doesn’t know what the hell to call it. If she meets someone who’s like a bit more deaf than she is (but not Deaf), she doesn’t know what to say to contextualize herself. It’s so weird.
Maybe because I was a translation scholar, I love this kind of discussion. I’d be interested to hear (but talk loud! Heh.) what you all think of People First language, in all its permutations.
[Button (that I should really get for public situations) available here.]
Community health care is so important. These two people help us understand why.
liz | 2:47 PM | DISABILITY
The headline at NJPoliticker.com reads: “CODEY BILLS WOULD TRANSFORM PATIENT CARE AT STATE PSYCHIATRIC HOSPITALS”
A package of bills sponsored by Senate President Richard J. Codey that are designed to protect patient safety and improve employee training and oversight at state psychiatric hospitals was approved yesterday by the Senate Health, Human Services and Senior Citizens Committee. … Sen. Codey worked closely with the Public Advocate’s office in drafting these bills, in part, to address a number of injuries and deaths that had arisen recently at state facilities such as Ancora Psychiatric Hospital.
Bill S2492, would require the Department of Human Services (DHS) to establish a training program for staff members who work directly with patients at state psychiatric hospitals in order to ensure the delivery of safe, secure, and therapeutic care. Utilizing best practices in patient treatment, the curriculum would include topics such as state and federal reporting requirements, patient safety, disease prevention, health wellness activities, anger management, skilled decision-making and how to deal effectively with life-threatening emergencies. … The bill would require DHS to establish an on-site educational assessment and remedial instruction program at each state psychiatric hospital in order to evaluate the proficiency of all staff members who work directly with patients.
The bill would also require the commissioner of DHS to establish minimum educational standards for staff members at a hospital who work or will work directly with patients. … Employees already working directly with patients at the time of the bill’s enactment would be required to undergo an evaluation to determine if they meet the educational standards or require remedial instruction through the on-site education program.Any employee that refuses to participate in the training program or fails to meet the educational standards and refuses to participate in remedial instruction, would be terminated from employment at the hospital. …
The second bill, S2493, would require current and future employees of state psychiatric hospitals, developmental centers and veterans’ memorial homes to undergo drug testing for controlled dangerous substances as a condition of employment.
The last bill in the package, S2494, would require DHS to report the number of physical assaults and deaths that occur at state psychiatric hospitals. The report would be a public record, posted on the official DHS website, and updated quarterly, but would not contain any identifying information about patients or staff members.
As a longtime fan of Sen. Codey’s commitment to mental health matters, I do think it’s a good move. But is it transformative? As an astute TTWS reader notes:
It’s hard to see how these three bills alone will transform patient care at New Jersey’s state psychiatric hospitals which includes Ancora, let alone insure the care long required by law, New Jersey Statutes Annotated 30:4-27.1(c), It is the policy of this State that persons in the public mental health system receive inpatient treatment and rehabilitation services in accordance with the highest professional standards and which will enable those hospitalized persons to return to their community as soon as it is clinically appropriate.
Too often words and deeds fail to intersect at our nation’s psychiatric hospitals. Transform and its variants are now used so frequently that any change is considered transformative. More recently at another New Jersey state psychiatric hospital where a new building was going to lead to transformation (click here, paragraph 5), the reality belied the representations, ex. Developing therapeutic alliances between patients and staff remains a challenge, with differences in race, ethnicity, social class and education creating a ‘them versus us’ scenario.
“When I use a word it means just what I choose it to mean — neither more nor less.” Humpty Dumpty
Activist extraordinaire Fran Hazam has sent much info on the challenges to voters with disabilities. If you need any of the forms mentioned herein, let me know by emailing me: firstname.lastname@example.org, and I’ll get them out to you.
One thing to keep in mind, Fran says: “a voter in the hospital will need assistance from a friend to complete an Emergency Absentee Ballot. The process can be complicated to use for someone who is ill, since the completed ballot has to be hand delivered to the County Election Board….not to your local polling place.”
She also says, “In Philadelphia Remember to Vote the 2 Questions First…..so easy to forget them after choosing candidates. But important YOU be heard on these changes to the City Charter !” This is especially good advice to us with cognitive difficulties.
The below is from Paul O’Hanlon, Esq., of the Disability Rights Network:
Election Day Survival Kit for Voters with Disabilities
Pennsylvania registered a record numbers of new voters last year. If the poll worker cannot find your name on the list of registered voters, ask them to look at the list of “inactive voters.” Voters who have not voted for a few elections, or who did not receive or respond to official election mailings have been placed on a list of “inactive voters.” The act of voting will be sufficient to transfer your name from the ”inactive” to the “active” list. If your name cannot be found on either list, and if you are sure you are at the correct polling place – ask for a provisional ballot. Federal law requires that you be provided with a provisional ballot in such a case. Do not leave the polls without casting a vote!
How do I verify that I am registered to vote?
How do I locate my correct polling place?
Will I be required to show I.D. to vote?
All first-time voters, and all voters who are voting for the first time in a precinct, can be required to show an acceptable form of I.D. You can find a list of acceptable forms of I.D. here.
If you do not have I.D. when you go to vote, and if returning later with proper I.D. is not an option, you have a right to vote by a Provisional Ballot. Provisional Ballots receive greater scrutiny than other ballots. However, if you are registered to vote, and if your signature matches the signature on your voter’s signature card, then your Provisional Ballot should get counted. If necessary, casting a Provisional Ballot is much better than not voting at all.
Can I get assistance in the voting booth if I need it?
Voters with disabilities have the right to have the person of their choice provide assistance in the voting booth. The person providing assistance can be almost anyone — a friend, a family member, or even a poll worker. However, the assistant cannot be: (1) the voter’s employer; (2) the voter’s union representative; or (3) the Judge of Elections.
When a voter with a disability requests assistance in the voting booth, the poll worker should look up your registration card to see if it has a notation indicating that you require assistance. If there is no notation on the card, you will be required to complete a written statement explaining the nature of your disability. Some voters may be offended at intrusive questions like asking for the name, phone # and address of their doctor. But the poll workers are required to enter all this information, along with the name of the individual who provided assistance, into the “Record of Assisted Voters.” The voting process is a very formal process with many safeguards.
What if I find my polling place is not accessible on Election Day? How can I vote?
Voters with disabilities, as well as seniors 65 and older — who are assigned to inaccessible polling places — are eligible to cast an Alternative Ballot. It is called an “Alternative” ballot because it is a method of voting provided to the voter as an alternative to having an accessible location. (Some deal!)
An Alternative Ballot looks exactly like an Absentee Ballot, but a different colored envelope is used to distinguish it from an Absentee Ballot. The normal deadline to file an application for an Alternative Ballot is the Tuesday before Election Day. However, if you did not know that your polling place is inaccessible, or if you had some good cause for not being able to file by that deadline – you can still vote! The Pennsylvania Department of State created procedures for an Emergency Application for an Alternative Ballot, which may be filed as late as Election Day at 8:00 p.m. A voter with a disability who discovers on Election Day that their polling place is not accessible can file an Emergency Application for an Alternative Ballot. This Emergency Application must be filed on Election Day, before 8:00 p.m., at your County Elections Office.
What if you can’t get to your County Elections Office on Election Day?
If you are unable to travel to the County Elections Office on Election Day, you can get a friend or relative to act as your agent to travel back and forth to the County Elections Office.
You will need to prepare three forms: (1) the Emergency Application for Alternative Ballot; (2) the Designated Agent Form; and (3) the Certification of Designated Agent Form.
What if my right to vote is challenged on Election Day? What if someone says I’m not competent to vote?
In Pennsylvania, we have only 3 qualifications for a person to register and to vote. The individual must be:
• A citizen of the United States for at least one month before the election;
• A resident of Pennsylvania and the election district for at least 30 days before the election;
• At least 18 years of age on or before the day of the election.
Pennsylvania does not have any laws that restrict the right to vote of people who happen to have developmental, mental health, or physical disabilities. In rare instances, Courts issue orders depriving people of the right to vote. But, so far , “electors” in Pennsylvania cannot be challenged on competence, ability or worthiness to vote.
Persons convicted of felonies (or any other crime) are eligible to vote – only individuals currently incarcerated in penal institutions for felony convictions are denied the right to vote.
Who can I call on Election Day if I’m prevented from exercising my right to vote?
Call the Election Protection hotline at 1-866-OURVOTE (1-866-687-8683)
Voters who speak Spanish can call 1-888-VE-Y-VOTA (1-888-839-8682)
Disability Rights Network of Pennsylvania
Voting is your right. Don’t leave the polls without voting!
Your vote matters — but only if you use it!
Employees at a state school in Corpus Christi, Texas, forced mentally disabled residents to spar in late-night fight clubs, telling them if they didn’t, they’d be beaten or forced to go to prison. Below is a news report. WARNING: GRAPHIC CONTENT.
This is the sickest thing I’ve seen in a long time. As someone on ABC News said, I think, the employees are behaving like Michael Vicks with his pit bulls — only these are human beings. It’ll be interesting to see if this incident causes as much furor as the Vick story did. Granted, there’s no celebrity involved, but you know how these things go.
ABC News has a good report on this, and you can link to a Nightline report on it as well.
Thanks to Joe for sending me this article about a man who wanted a driver’s license despite being diagnosed with schizophrenia. In my experience in community mental health, getting a driver’s license was basically impossible with such a diagnosis; psychiatrists didn’t want to sign the paperwork allowing a person to apply for a license. It was something that distressed me to no end. When I reported the problem to the city authorities, they were appropriately appalled. But nothing changed. A man would go in, ask for a signature that would allow him to simply take a permit test, and be rejected. Yet at the same time he was being told not to define himself by his diagnosis; what a mixed message. He was being told he could recover and lead a “normal” life. But what kind of life is it without being “allowed” to drive?
What made me angry is that I know plenty of incompetent drivers who shouldn’t be on the road, and they don’t suffer from mental illness. I also know drivers who have severe mental illnesses who acquit themselves quite admirably on the roadways (myself included). It’s a violation, in my opinion, of a person’s civil rights to prevent them from applying to get a license.
One woman who did get approval was empowered by it. She failed the permit test again and again, but it never ceased to be a goal, which fit in with the messages given by the community health center: Make sure the clients set goals for themselves; it gives them hope. Perhaps it was an unrealistic goal for her. I don’t think she’ll ever drive. But it was the trying that mattered, and if she ever gets behind the wheel, I hope she drives far away into the sunset with a great song on the radio. Just for fun.
A Guy, a Car: Beyond Schizophrenia by Ronald Pies M.D.
Tomorrow I’m going to get fitted for my hearing aids, which you see above. Yes, it’s quite sad that I have to get two hearing aids. The disabilities just keep piling up. My colleague, Tara, suggested I just duct-tape my head together and be done with it.
What this means is that I won’t be blogging until later in the day. But I’ll be able to hear your comments with crystal clarity.
liz | 10:05 PM | DISABILITY