Only Anecdotal

No numbers, just stories

Archive for December 2012


leave a comment »

I resolve. I solve. I wish I could solve the difficulties I see in the lives everywhere.

In particular, I am thinking this eve of 2013 of the many, many people who by some stroke of bad luck are seen as “less worthy” of entitlements, like life.

I am thinking of the non-elder community. Not to discount the very real needs of people over 60, but after four years and 275 visits to consumers, I have to say: age really is just a number. I am saddened enormously that on a policy level, we still remain separate, we aging and disability folks. In many respects, I think our communities are farther apart than ever right now.

I have thought about this over and over as I have worked in my own mind without these sorts of biases. In spite of my efforts to look at people as people first, and categories second, I remain frustrated by the “eligibility” requirements of programs that help people.

A few words of advice:

Do not acquire any other chronic, progressive disease that hits in your 40s or 50s. It will derail your entire life and leave you bankrupt just when your teenage kids and middle-aged spouse need you to be in prime earning power. If you have to get sick like this, wait until you are 60 and can get help more easily.

If you have to have a developmental disability, do your family  a favor and score low on your IQ test. Please. Otherwise, you will not qualify for the help you need, and will either exhaust your family or be left to figure out a sometimes cruel and confusing world on your own.

Do not have a mental illness. Just don’t. There is a reason that people who recover from mental illness call themselves survivors, and it has more to do with the “treatment” system than it does with the illness itself.

I know this all sounds quite cynical, and sadly enough, I could go on and on. It is difficult not to be pessimistic as we approach the many changes happening in the disability world right now. Over and over, we see younger people with disabilities all the more marginalized–and perhaps more tragically, fooled into thinking that they are truly included in the unified effort to streamline services and health care. I believed in these efforts, once, and want to think that understanding will still come.

But I see much more often that money changes hands behind closed doors, that those who do not understand the very human right of self-determination are left with the funds to reward those who are compliant, those who do not question, those who play nice…

I resolve to cause more trouble, to question more, to speak up, again. And again.

I resolve to tell these stories, to love more, to convince you to love more, too.



Written by Only Anecdotal

31 Dec 2012 at 5:25pm


leave a comment »

We are all shaken by the tragedy in Newtown, Connecticut. It is unfathomable to most people that anyone in a peaceful society could walk into a school–an elementary school, no less–and start killing.

But are we such a peaceful society? I am troubled enormously as I read the comments on any online news site, for nearly any story, anonymous opinions that I always suspect reveal the true opinions of their writers. Blame: a mental illness is to blame, a divorce is to blame, a gun is to blame. Truth: tragedy from many aspects,  resulting in the loss of so many innocent lives. Tragedy to be the family of any of the victims, including the shooter himself.

Liza Long wrote her own response to the shootings in the Blue Review. It is a brave account of what it is to be the mother of a child with mental illness. It is a brave piece, or perhaps a foolish one, as Long will no doubt know years from now, as her son grows, as her name (and his) continue to be attached to the article she wrote.

To allow oneself to be identified as a parent of a child with a mental illness requires a certain faith in the world: faith that others will be understanding and accepting, that they believe in recovery and in the safety that will remain in the community even when people with mental illnesses live within it. Even when we know that they live within it. Events like the shooting in Newtown, Connecticut, only reinforce the notion that we indeed are not safe. The question is why.

The truth is that even within medical communities, mental illness is treated differently, stigmatized, separated. It is not unusual in the hospitals I visit that the staff from the main hospital do not even know the staff from the locked psychiatric units that are beneath the same roof.

Mental illness attracts our attention, and our fear.

Our fear stands in the way of reaching out, too often. We resent the effort it takes to understand, much less to accept.

Our fear leads to cruelty, I fear–the sort of cruelty that then creates even more barriers to treatment. If treatment is hell, after all, a person is best off staying clear of it…

I do not know why Adam Lanza chose to kill 26 innocent people, 20 children. I shudder to imagine the mind that envisions such horror and enacts it. Maybe I never want to understand. I can imagine that understanding was needed perhaps years ago.

I do know about the many families that live in constant fear that a loved one will finally break down completely, that the Psychiatric Emergency Services were wrong when they determined that the loved one is not a threat to him/herself or others, that the 72-hour stay is over, that the family will soon become victims, that the said loved one will wrap a car around a tree or jump off a bridge or become a heroin addict or steal or harm or God forbid kill someone. I do know about the families that I see too often, families who watch as the chaos takes over while the violins play in the background, families who believe they are a guardianship away from effective treatment.. sometimes. Assuming there actually is effective treatment.

I wish I could point to the advances that come to mind: the Rosie D. case in Massachusetts, which resulted in the creation of the Children’s Behavioral Health Initiative. To mental health parity. To increased awareness in general.

But sadly, from my weary place here in Massachusetts, I see still more restrictions, everywhere: CBHI only for MassHealth consumers. Mental health providers woefully low in numbers, and for those direct staff, so often underpaid, so often inexperienced if initially enthusiastic, so often burned out. Inefficient procedures for hospitalization. Near-impossible eligibility for DMH services. Some great champions in mental health, yessir. But too few. And too much harm already done to erase the fear of those with mental illnesses who have sought treatment, and found instead a prison, real or under the guise of healthcare.

I have not even mentioned the weapons. Oh dear God, those weapons. Why? Who needs assault machinery in a suburban neighborhood? Who needs to arm an army from the basement of a home? Why do we make it so easy to buy something that has no other use at all but to kill?

Like most people, I imagine, I felt sick at the thought of the parents, their nightmare. I wish I had answers, quick solutions, a magic wand. But where would I even point it? I know that we cannot build the supports necessary to prevent these sorts of tragedies without a great deal of work–early work, before things happen (call it prevention)–belief, training, money. And will.

I hope we will. I hope we can.

Written by Only Anecdotal

17 Dec 2012 at 8:33pm

A la recherche…

leave a comment »

Longtemps, je me suis couchée de bonne heure.” But not so much now, except at the end of a week like last week, which, like Proust, seemed to go on without respite, but with some satisfaction I hope in the end.

(The sentence is not mine, but Proust’s, not translated, because the translation gets too complicated. But here goes: “For a long time I went to bed early,” sort of, but it is also the first and only short sentence in the volumes that consumed so much of my younger years. Now, transplanted here into my blog, it is just the beginning of my next rant.)

Satisfaction, I admit, is a stretch, light of the season seeming to go out at just the wrong time as a few fear-mongering Senators came up with excuses around home schooling and parents’ rights and what-not to knock down ratification of the UN Convention on the Rights of Persons With Disabilities. Reading Santorum’s explanation in the Daily Beast, I find myself frustrated that he and the likes of Sarah Palin assume that they get disability and “special needs” children because they are parents. They have been there. And they have. Well. Kind of.

Truth is, I might agree that a parent is best equipped to make decisions about his/her own child, disabled or not. But I am quite sure that Santorum has never had to feel intimidated at an IEP meeting, or has ever had to fight too hard for accommodations, much less for ways to pay for the long list of services that his child might need. His claims that “international bureaucrats” would determine what is in the “best interests” for a child only reminds me of the countless IEP meetings that I personally have attended, for my own children and with other parents. So often have we gone in first wishing for what is “best” and learned that we can ask for what is “appropriate”.

Just to note, reading on in Santorum’s statement, I wonder if he really has any idea what he is talking about when I see things like this:

“How would this new standard play out in a battle between a single mom fighting a stubborn school district for special-education services for her disabled child under the Individuals with Disabilities Education Act? That landmark legislation signed by President George H.W. Bush made it clear that parents—not government officials using a “best interests of the child” standard—are ultimately in charge of their child’s education.”

All right, the single mom, poor single mom fighting the school. Been there. Done that. But what landmark legislation does Santorum mean? IDEA was reauthorized in 2004, signed not by George H.W. Bush, but by his son, George W. Bush. As landmark legislation, it was the 1975 special education act signed by Gerald Ford (yes, renamed I admit from Education of the Handicapped Act (EHA) to Individuals with Disabilities Education Act (IDEA) in 1990 under George H.W.) that was the beginning, truly. Maybe Santorum is confusing this with the ADA, which indeed was the landmark disability legislation under George H. W. Bush..

But I digress noting these sorts of mindless details. In the end, I am ashamed that we could not pull this off. I am glad that so many strong supporters came together to support ratification of CRPD, to promote disability rights worldwide, to support this human rights issue–but sad that they were defeated by a few fools. So sad that these fools use their power to walk backward in the world.

In the meanwhile, my hard-earned sleep came at the end of the week, a week of watching the Duals Demonstration Project as it rolls merrily along to readiness. No comment. Yet. I did have a dream where someone in a room next to a big important meeting was playing “Dueling Banjos” which of course begins rather quietly before all hell breaks loose, and in the dream, people in the meeting were becoming agitated in the process. I am sure this has nothing to do with the tense energy that seems to be building. We move forward.

But suffice it to say that I am planning on my full eight hours of rest as this rolls out.

More anecdotes next week. The stories continue, all compelling, trends continuing of burned-out (or injured/sick caregivers), aging parents of adult children with developmental disabilities (many of these adults now have health care issues of their own that are affected also by their disabilities). More to say, to think about, to wish for. Until next time…

Written by Only Anecdotal

10 Dec 2012 at 10:55pm

Posted in advocacy, community, disability

Tagged with , ,


with one comment

The hospital was busy when I walked in, the familiar professionals all gathered in their huddles as I walked past and found the room number. The son of my first call peeked his head around the curtain when I knocked, and I waited as he discussed his parents’ care with the doctors who were already there. Another family called my office, and a message arrived on my cell phone, running late, child sick, will be at the hospital soon.

Hospitals are hectic places nearly all the time, except in those moments of seemingly infinite waiting: waiting for a change, a death, a birth, a room somewhere else. Working with crisis is difficult, but in a hospital the notion of normal is flipped–because it is the designated separate space we have created within our society to cope with emergencies, with the events that so often are the catalyst for enormous changes within our lives. But within the institutional setting, the “abnormal” is normalized, categorized, redefined to fit within rules and structures imposed perhaps at first to lessen the chaos, but sometimes it seems only to tighten the control. Contained, life’s catastrophes seem nearly manageable.

And indeed, last Friday, the families were facing health crises that will change their lives. In these particular cases, the accidents and illnesses may have been one more thing, the defining moment of acceptance that, yes, this is important, our lives are not what they were. We must do things differently when we leave.

I was thinking about this over the weekend, the notion of life-altering events and our definitions of “disability”.

My agency held its first gala fundraiser on Friday, an event that reminded me of the many people who have fought so hard to redefine “normal”–and more than that, to open the world to people who by some stroke of bad luck find themselves separated from the rest of the world because of a body that in some way does not work the way that most people’s does.

When I was younger, I read Foucault, looking at notions of power and sexuality in literature. In so many ways, analyzing things I was reading seemed so detached from ordinary life, but Foucault’s lessons were vivid reminders of how our organizing of the world has created so many barriers to people who do not fit within the confines of what we deem acceptable. His discussion of the dehumanizing aspects of the medical regard (translated to “gaze”), come to my mind each time I think of the harm that has come of seeing the human body as a separate entity from the human being it contains. The very origins of the independent living movement reject this “medical model” of disability, too, as it sees disability as a problem to be fixed, rather than seeing the whole person and his/her individual needs around life itself.

I am inspired when we have moments to reflect on the courageous moments in history, moments that someone like my own boss Paul Spooner spent chaining himself to inaccessible public buses, or arriving to rescue someone from an institutional setting. I am so glad that my job was created, not to rescue people from nursing homes so much as to keep them from ending up there to begin with.

At the same time, I find myself still frustrated at the barriers that still remain, mostly the financial ones, but the lack of accessible housing and transportation and employment, as well. As I walk into crisis day after day, in the temporary institutions that are hospitals, I keep thinking that there must be a better way to fold these events better into the context of our lives, to expect it, and to adapt to the changes that come, so often. This will never be accomplished without listening to the people who need the services and accommodations, and I will continue to fight for this as long as I need to. It is good to know that so many amazing people have paved the path already.

And in a sad moment this morning, I remembered yet another person who inspired me and helped me numerous times in my work to bridge the gaps in the very face of crisis situations. I have written before about the Neighbor Brigade, a volunteer effort organized town-by-town to help people with the very stuff of daily existence that is so hard in an emergency health situation. Neighbors helped many of the people I saw with things like rides to visit a recovering spouse in a out-of-town short-term rehabilitation hospital, with hot home-cooked meals, with a visit to a pet or a plant. I was always stunned by both the generosity toward people who needed help, but even more by what the opportunity to help out gave to the volunteers themselves. This is the stuff of community, and it was created by a woman named Pam Washek, who herself was diagnosed with cancer at the age of 36. After she recovered, she made it her mission to help others in the situation she had been–many without strong support networks. The last time I talked to Pam, she was on her cell phone on a Saturday afternoon, calling to let me know that she had found a ride for a woman… It was July. Little did I know that she would become sick once more about a month later.

Pam died yesterday.

Pam, I hope you and your family know what a difference your life made to so many others.

Written by Only Anecdotal

3 Dec 2012 at 10:02pm