About Savannah Logsdon-Breakstone

Random and frequently political. Proudly Queer and Disabled. Proudly Autistic and crazy. Oh, and I do fandom-y stuff sometimes.

Rethinking How We Value “Productivity”

by Lateef McLeod

Work for me is something that I handle, but do not fully appreciate. There are many reasons why I say this. One reason is that I do not think my work is valued much in the wider social context. My written thoughts and experiences are sometimes so far away from the main stream that is often over looked. This reality makes me think of how much is my work really worth in today’s economy. Do I, and other people who use AAC to communicate, have the capability and the desire to be part of today’s workforce, which is being streamlined so employers are getting workers who are more productive but less costly? Is this the best option for us to aspire to?

The professional classes of people who use AAC are few and far between in today’s society. Besides a few notable exceptions like Dr. Bob Segelman, a sociologist, and Bob Williams, the Associate Commissioner for the Social Security Employment Program, most people with severe mobility and speech disabilities do not have the opportunity to pursue lucrative careers or even full time to part time work. My experience with the work force in light of this fact has been very fortunate in securing a blogging position at United Cerebral Palsy of the Golden Gate in Oakland, where I work part time. However, even with this steady income combined with my Master’s degree, I still only make roughly minimum wage a year. This means even with my education, the way this economy is set up, my production value is greatly decreased because of my disability.

In Sunny Taylor’s article, The Right Not to Work: Power and Disability, she points out that in today’s economy people with disabilities are worth more in the private industry in nursing home beds then out in the work force. Taylor argues that people with disabilities should have the right to determine the level of production they can contribute to society without being stigmatized for it. This philosophy directly challenges the mainstream view that a person gains status in their society from their occupation. Taylor is indirectly expressing that people with disabilities intrinsically have value in society whether they have a job or not. This revolutionary thought liberates people with disabilities from striving to validate themselves through the entrance of the regular workforce. It makes people with disabilities the masters of our own production who are able to define and determine exactly how we will contribute to our respective community.

To take control of your work productivity is a revolutionary idea for people with disabilities, and I think it is empowering for people like myself. Instead of conforming to the normative ideal of working a nine to five job until I eventually retire I am free to pursue more creative endeavors. My passion is to pursue a career as a poet and a novelist. This means that I have to frequent spoken word and other poetry events to get my name out there and to promote my recent published poetry book. As I develop as an artist I have to make sure that my other obligations do not distract me from my creative work. Time management really helps me in this endeavor and should be a focus for any person with disability who wants to be productive in reaching their goals.

I am not saying full employment is not a worthy goal for people with both a severe speech disability and mobility challenges. For those who want a traditional career, I encourage them to succeed in their goals. However, for those who would like to be creative with their productivity whether it is creative artwork or just being more engaged with their community, it is important work that should be valued at least with acknowledgment. For some people who communicate with AAC, just staying engaged with their surrounding community might be a full-time job in itself.

Editor’s Note: Tomorrow is Blogging Against Disablism Day (BADD), and many members of the community take the day to blog about issues like those we cover here at DRN. To learn more or to find out who is participating afterwards, follow the link.

Advertisements

Disability History 101 – The Rise of the Institution

by Savannah Logsdon-Breakstone

Institutionalization: a core part of what many think of when talking about our history of disability in the United States. But where did the practice come from?

The origin for institutionalization of people with disabilities isn’t a unified one. For each of the general populations or subsections of disability, there is a different origin. In this post, we will cover Mental Health Disabilities and Intellectual and Developmental Disabilities. These aren’t holistic attempts to cover institutionalization, but simply an introduction to the origins of the practice in these populations.

Institutions and Mental Health Disabilities

The origin of institutions for those with mental health disabilities is a long and complicated one. The institutionalization of some individuals with the most behavioral outbursts dates back to the 13th century, but the history of institutionalization for the reasons in the United States stems more from criminalization than treatment.

In the “colonial era”–that is, pre-revolutionary European occupied America–institutionalization wasn’t an option. Either you were left to your own devices, or you were put into jail as a criminal. The term “committed suicide” comes from this portion of our history. Suicide was not struck from all state’s list of felonies until the 1990s, and even attempted suicide was historically considered as a crime equivalent to attempted murder.

Suicide attempts weren’t the only crimes or “crimes” that a person with a mental health disability might find themselves jailed for. Certain municipalities or towns made laws requiring a license to beg, allowing a wider range of the poor–including those with disabilities–to be put in pauper’s prisons. Others might be imprisoned for petty crimes and then held for longer terms than their fellow inmates without disabilities.

When the idea of treating those with mental health disabilities came, it gave the impression of kindness–in some eyes, unearned kindness–to place individuals in “hospitals” specializing in Mental Health. 1773 marked the opening of the first such institution in the United States. Over the next 100 years, many new such hospitals opened, changing in design based on the latest theories of the time.

It is interesting to note that the transition of mental health disabilities (MHDs) from criminal to illnesses corresponds roughly with political and social unease. There is some evidence to suggest that the changes in thought about the role of the citizen in a democratic republic were at play. As the US worked to define how we would assign the roles and responsibilities of our citizens, new thought was given to those with MHDs as well.

Some even cited people with MHDs as a threat to the new social and political structures rather than the simple public nuisance of the past. That the “insane” might have access to the rights of citizenship to make decisions in our society caused some political thinkers to support the movement towards long term hospitalization. These same thinkers then provided or guided funding as those seeking “humane” and “moral” treatment were building what would eventually become a system of institutionalization.

Institutions and Intellectual and Developmental Disabilities

The use of institutionalization for those with intellectual and developmental disabilities is influenced more by economic factors than the political ones dealt with by those with MHDs. Rather than a protective stance that even jailing those with MHDs came from, it was a fairly utilitarian desire to teach those with intellectual and developmental disabilities that they might work. These ideals would later become restrictive in the name of protection of society from the “feeble-minded menace.”

In the face of a world that was changing economically, certain thinkers in the early 19th century began to advocate educating those who were seen as “feeble-minded” that they might provide for themselves. Economic pressures were making it more and more difficult for families to continue educating or caring for family members on their own. Initially, only those who showed promise for education were waccepted to the schools established for such education. Over time, these became boarding schools.

It wasn’t until the states promised funding that schools for the feeble-minded began accepting those with more extensive care needs. Indeed, the initial motivations of education and placement in employment in the community was slowly being undermined by economic interests. Not only was there more funding for custodial care over time, but economic fluctuations made it more and more difficult to place even trained individuals in the community.

By the time that eugenics and images of the feeble-minded as a threat to society emerged, the idea of custodial and institutional care was already in place. These new images created more pressure to continue the trends, and between 1880 and 1900 the intellectually disabled/developmentally disabled population institutionalized rose from a little over 4,000 to 15,000.

The origins of the practice of institutionalization has varied across types of disabilities.  Here we have given a short history of some of the justifications for these practices.  A familiarity with our history is paramount to understanding where we are today.  De-institutionalization continues today.  For more information on the current de-institutionalization movement, visit ADAPT, an organization which is engaged in civil action in Washington DC this week in the name of de-institutionalization.


We Will Not Be Silenced

by Erin Lewy, Organizer

When the question of theme arose during disscussions for this blog, one answer was given by many voices: We will not be silenced. We will not hide ourselves, our scars, our pain, or the history that they represent. We will celebrate our triumphs and mourn our losses loudly, where people can see us.

We write in honor of everyone who has been silenced during the course of our fight for equality. We write in honor of people like George Hodgins and Tracy Latimer, murdered by their parents- the very people charged with their care.

We write with the full knowledge that it would be less messy for everyone if we just shut up, if we didn’t examine our history and the people who have shaped it, if we did just like Jerry Lewis has told us to and stayed in our homes, if we just went away. We honor these pieces of our history, and we’re here to make new history, to stand up in the face of brutality and erasure and say that we are still here, loud and proud, and you cannot silence us; you will not. We were here, we are here, and we will be here, telling you our stories and refusing to disappear. We are a community, one that is vibrant and alive and here to shine as bright as we can for our youth, for their parents, for our allies. We will not be put away and we will not be silent.

Our silence has been encouraged, cultivated, via everything from the eugenics movement to police brutality and worse. We face violence and death if we dare to speak the truth; even murder by our own mothers and fathers.

We can do nothing in the face of such utter depravity, such unfairness, but stand up and be as loud as we can.

That’s what we decided when we heard of yet another murder this month, of George Hodgins, a 22-year-old autistic man. Murdered by his own mother, who ultimately will never face human justice because she took her own life, it may seem that George no longer has a voice here. But we will not allow George to fade into obscurity. We will not allow his name to be erased from our history. George’s murder puts fear in our hearts and fire in our bellies. We will be a beacon, speaking his name and telling his story to the best of our abilities. We will remember George, and Tracy Latimer, and all of the people in between them. These are our people, and we will speak out for them. In the face of claims that George’s murder is the tragic story of his killer, we have no choice but to speak out, as loudly as we can, and tell you that we do not accept this narrative. We are here to honor George, and as such this blog project is dedicated in his memory. Through the tragedy of his death, we have formed a group of activists, advocates and writers impassioned enough to challenge the stereotypes of disabilty and to show you all the many facets of our community, our struggles and our history.

In the coming weeks, we will introduce ourselves to you. Beginning on 3/30/12, the day of many national vigils in honor of George and other people with disabilities who have been the victim of murder, we will bring you a new entry which looks at the issues of murder, assisted suicide, violent crime against and abuse of people with disabilities. We will post until each of our staff has had their say, including our proofreader, who could not remain silent any more than our writers could. We will show you who we are, and the things that put fear into our hearts, the things we face every day but refuse to be stopped by. The things that are swept under the rug, the things that need to be talked about, faced, and known.

We are a diverse group of people with disabilities from all walks of life. We have one thing in common: we are ready to speak. For us, the time is now. It may never have been more true. We are here in honor of George, and we will not be silent.

Restraining Wanderers- A Little History

-by Savannah Logsdon-Breakstone

[Trigger Warning: history and images of restraint and restraint related abuse. If you would like to view this post with the images redacted, please see the image-less version.]

Wanderers- people with Mental Health or Developmental Disabilities who “wander” off. The most common image of a wanderer is an older adult with dementia. I know that- before her health failed- my great grandmother ended up in a locked ward at a nursing home- the “wanderer’s ward.”

A little more relevantly, a number of Autistics are or were wanderers, myself included.

One afternoon when I was in 1st grade, a teacher’s aide called my mother to let her know that she had some concerns. I wasn’t making it into the class room- I would get off the bus and wander around the school yard, looking at all the little things that exist in yards on a warm fall day. If I *did* make it into the class I would end up wandering the halls when the teacher would send me to the speech room. This was in addition to other in class things, too. At this point, my mother demanded that they have an aide escort me from the bus to the class, and my “services” began. This was a year before Asperger’s would be added to the DSM IV.

The reason I bring this up now is because the CDC put in their recommendations for the ICD-9-CM (International Classification of Diseases, Ninth Revision, Clinical Modification; the US government’s official system of assigning codes to medical diagnoses and procedures). In this, they included a recommendation for a diagnostic code for “wandering” behaviors. (Here is the Complete PDF of the CDC’s recommendations.)

Here’s the problem- having it listed as a diagnosis/diagnostic code doesn’t add anything to the situation to make the constructive steps they outline happen. What it does is create an excuse or justification for things like restraints. Wandering behavior sure has in the past.

Image of a bed with slatted walls and a slatted lid, so that it is basically a wooden cage, on display in lobby of Peoria State Hospital. Sign above the crib reads, "Utica Crib, once hailed as a triumph of the human care of the mentally ill, a woman was confined to this crib for fourteen years in an Illinois institution. Twenty-six of these abominations were used in Illinois state hospitals. This kind of restraint was banned in 1905."n care of the mentally ill, a woman was confined to this crib for fourteen years in an Illinois institution. Twenty-six of these abominations were used in Illinois state hospitals. This kind of restraint was banned in 1905."

Cage on display in lobby of Peoria State Hospital. Sign above the cage reads, "Utica Crib, once hailed as a triumph of the human care of the mentally ill, a woman was confined to this crib for fourteen years in an Illinois institution. Twenty-six of these abominations were used in Illinois state hospitals. This kind of restraint was banned in 1905."

The Utica Crib was developed at the New York State Lunatic Asylum in the  19th century. It was based on a French design, but the Utica Crib incorporated the slats. It was used to keep people who might get up and wander around at night in bed. This would allow a smaller staff, or even enable another problem- having other patients do a percentage of the care work. This issue was more prominent at Developmental Centers, where those deemed as “higher-functioning” were enlisted as unpaid care-laborers.

An Image of two beds. In each bed is a male presenting person who has straps holding them down across the waist with further restraints binding the feet together and to the bed, as well as the hands.

Patients tied to bed with leather straps -- a medieval method still in general use. Photo by A. Stettner. 1947

Bed Straps were Used in a similar fashion. The patient would be tied to the bed, to limit movement and prevent wandering. In some cases, the individual might be strapped down in the daytime hours as well as at night.

A Young person with dark hair is tied to a wooden chair, a restraining jacket additionally used to restrain them.

from Christmas in Purgatory, 1974; original caption: "Perfected and modified according to circumstances, chains gave way (during the early nineteenth century) to a long series of other ingenuous contrivances, all designed to limit the patient's freedom of movement. According to Oegg, restraining devices were generally thought to be as necessary for the preservation of life as eating, drinking, etc." Emil Kraepelin

This is one of several images of individuals being tied to chairs or Benches from A Christmas In Purgatory, a famous Photo-essay/expose on the conditions of those with Developmental Disabilities in an institution from the early 70’s. (Here’s A child Bound to a bench with hands tied and a nude woman tied to a bench next to several other women.)

This was another method frequently used to restrict wandering behaviors. The patient was tied around the waist to a lead on a bench in a matter that would keep them from getting off the bench. in some cases, additional restraints were used. In the above photograph, the individual wears a restraining jacket, and propped up with a pillow- which would further restrict the amount of movement the lead would allow.

Restraints that further restrain movement can lead to a number of issues, including bed sores and staph (and in more recent times, MRSA) infections.

I researched the local Developmental center’s history when I was in high school, and it required firsthand sources. In interviewing several people who grew up in the surrounding community and spent time on the grounds (usually because a parent worked there), I heard a lot.

The more mild stories were of people with leads tied to outdoor benches, giving them a 5 foot range in which they could wander. Some of the more frightening ones involved peering in a door window as a small child, to see an individual tied to a chair, urine stains on their pants and pooling underneath. When my interviewee had asked what had happened, one of the staff members had replied that he kept “elopeing” and that he still had a couple of hours left in the chair. She remembered hearing him crying to be allowed to use the restroom. This would have been in the 1960s.

Reforms have happened in the recent past. But Abuses still happen, people are still restrained, and bed restraints of various sorts are still used on night time wanderers. Presenting a code for this behavior just adds one more thing to legitimize some very damaging approaches to people who have a long history of abuse.

It isn’t some distant fringe that advocates restraints. In researching this post, I cam across repeated examples of this. Modern versions of the Utica Bed, but now made with mesh and external zippers, marketed to parents of children who wander. In 2005, the FDA had to issue an alert on Vail Beds because of safety hazards.

Older Adults with dementia are put in “Gerichairs”- geriatric wheelchairs that bind the user to the chair, too often in a way that prevents the user from unbinding themselves. While they can be useful tools for those who need the physical support, when used as a restraint tool it can be dangerous. Bedsores and other infections are common remarks on the use of these chairs. (An FDA statement on improper use of geriatric equipment.)

These abuses are not only in our past. Pretending otherwise just endangers people. I strongly believe that the implementation of a wandering diagnostic code would only add a justification to a group of people who already invoke their own personal difficulties as reasons for abusive behavior.

Originally posted at Cracked Mirror in Shalott.

Gaining Confidence

-by Jenna Clark

I’m a big fan of The Biggest Loser, it’s one of my many guilty pleasures. A lot of times the contestants face extreme activities that force them to face their fears. As I watch these people jump off buildings, zip line, bungee jump…I get jealous.

I want to face my fears. I want to grow and change and break the cycles I sometimes feel drown me. Because whether expressed in a positive or negative way, I was raised to believe I couldn’t do “normal”* things like living on my own.

But I did. After high school, I attended a university in the city and lived alone in a dorm room. At first, I had attendants help with everything. I gradually learned to do more for myself and relied less on an attendant. One morning, I even did *everything* myself. I woke up at 5AM for a 9:35 class.

After that, I learned what I could do on my own, what I could do but that took too much energy, and what I struggled with. It took that 3 hour morning to know my limits and get a balance
between doing things for myself and getting help — a balance between proving a point and living.

Like most people at that age, I was — mostly — fearless. I knew my disability meant I looked at life differently and I was more aware than most that I wasn’t invisible, but being a teenager meant I was ready to face things I probably should’ve ignored.

Fifteen years later, I’m afraid of everything and am stuck in the mindset that I can’t live alone. There’s a certain truth to that — when I move out I’ll need a live-in attendant, or at least attendants that work in shifts — but instead of encouragement, I face mostly positive ways of saying I’m incapable of living by myself. To be fair, a lot of discouragement comes from not having the financial resources. Others, though, are more focused on my disability.

My disability does not in any way mean I can’t live alone. I need 24/7 attendants, but that doesn’t mean I’m incapable of independence. And no, independence doesn’t mean living without help. It means controlling my life, whether that’s hiring attendants or figuring out ways to do things for myself.

My fears stop me from doing many things. I want to face those fears by jumping off buildings and trusting people and wires and whatever else would be there for support. I checked, but I didn’t see any organizations that provided those extreme activities for people with disabilities.

That idea goes to the top of the list of organizations I want to create when I finally have the resources. But that means I have to face my fears in other, smaller, ways. I don’t know how yet, but I’ll figure it out. And if I get the chance to zip line or jump off a building, I hope I have the courage to follow through with it.

* I hate the word normal but couldn’t think of a better word.

Originally Posted at Reverse the Sky.

Just because it’s ableist, doesn’t mean it’s bad

by Cara Liebowitz

I see the word ableism getting flung around a lot lately.  Most of the time, it’s justified ableism.  But people toss it at others like a knife.  Like a weapon.  Like it’s a word that’s meant to hurt.  And then the recipients, the one who are being informed of their ableism, get offended and very hurt, because the connotation associated with all these -isms is that they’re bad, very bad and if you’re an ableist, then you’re a horrible horrible person who needs to go sit in a corner and shut up.

Ableism doesn’t mean you hate disabled people.  It doesn’t mean you’re an evil person.  It doesn’t even mean you think disabled people aren’t capable of anything, although all of those qualifiers can certainly fall under ableism.  Ableism is the system of oppression that faces disabled people in our society, a system that marks disabled people as inferior and most importantly,other.  It doesn’t have to be done with malice to be ableism.  It doesn’t even have to be done with conscious intent.  Ableism is separating society into us and them, sequestering disabled people into this category of not-entirely-human, mythical type people that are: a) so sad and tragic and/or b) sooo inspiring!!

Ableism is dictating that there is a right, a ”normal” way to be, and disabled people aren’t it.  Ableism is merely “tolerating” us instead of accepting us for who we are and embracing the differences that make us unique.  Ableism is preaching that diversity makes us stronger, and then conveniently leaving disability out of that equation. Ableism is believing that we have a lesser life, that we suffer, because we are disabled.

Ableism is “otherizing” us.  Ableism is using language that really has been used over generations to attack disabled people, to tell us that we are not normal and as such, we are less than human.  And ableism is using that language without any idea what it has done, how many people it’s hurt, because society doesn’t want us to know how, in a society that’s supposed to have conquered discrimination the way we conquered countries, millions and millions of people were systematically threatened, bullied, and slaughtered.  Ableism is never speaking about disability history, never even knowing that there is a history, because our history is not considered history.  At best, our struggle for rights is largely viewed as a cute little adolescent rebellion, complete with whining protests and stomping of feet.  At worst, it is completely wiped from the collective consciousness, because the world doesn’t want to see us, hear us, acknowledge our existence beyond using us, our stories, as a tool to make the privileged feel better about themselves.  Ableism is using us as scare tactics, as examples of what you don’t want to be.  Ableism is assuming that our lives are inherently less worth living than yours.

Ableism is having only one definition of disability, and only viewing a disabled person as one way.  Ableism is calling the rest of us fakers and benefit scroungers, because we don’t fit yourdefinition of disability.  Ableism is cutting the services that we need to survive.
Ableism is putting disabled people in a box, a box that is never opened and has very clear edges.  Ableism is never recognizing that you or someone you know may be disabled, because they have a productive life.  Ableism is thinking that it is okay, even commendable, for disabled people to want to die, because our lives are not worth living.  Ableism is killing us before we have the chance to live, all because of a pre-conceived notion of what our lives will be like.

Ableism is warping the public notion of an entire group of peopleas “so smiley and happy all the time!” Ableism is reducing us to a caricature of human beings, painting us all as one shade of a color, when in fact we are as diverse as any other group of people.  Ableism is dividing a diverse community into “high functioning” and “low functioning” and deciding that only those who fit your idea of “high functioning” can possibly have anything to say.  Ableism is defining disability as solely an unfortunate happening, and not recognizing the social and cultural factors that oppress us.  Ableism is denying that you have privilege, that you can feel safe, because you are nondisabled.  Ableism is a world that is centered on the nondisabled, instead of being welcoming for everyone.  And truth be told?  Ableism is claiming that there is no ableism.

You don’t have to know that ableism exists to be an ableist.  Nor does being an ableist mean that you are a horrible, soulless person.  Being an ableist just means that you have privilege you need to acknowledge, and patterns of thought that you need to change.  So what should you do if someone calls you out on your ableism?  Take a step back.  Reflect on your privilege and what you said or did.  Recognize why someone may take offense at that.  If you don’t understand why it’s ableist, don’t start pointing fingers at the other person, claiming that they are oversensitive.  Ask politely, and think on their answer.  Apologize, and learn a lesson.  You are not evil because you are an ableist.  You are simply an ableist.  So take the opportunity to learn about your own privilege.  Hopefully, you’ll come away knowing more than you did before.

Originally posted at Butterfly Dreams.

The Chronic Illness Edition of “My Little Ableist Friend”

-by Staci Forrest

A while ago my friend Cara (@flutterflyinvasion) posed on her Blogspot blog an entry called “My Little Ableist Friend.” After reading this entry, I decided that It is time to tell you all about my Little Chronic Illness Ableist Friend.

—————————————————————————————-

My Little Chronic Illness Ableist Friend is with me every minute of everyday. She constantly whispers into my ear about how I am “faking” my chronic illness. How my chronic illness is “insignificant.” How I am being a “baby” and “just looking for charity” when I admit to others that I have a chronic illness. How I need to be “more discrete” when taking my medication in public-or, rather, not take my medication in public at all. Most of the time, I can shut her up. That is, until the pain comes.

When the pain comes, my Little Chronic Illness Ableist Friend gets louder. Her tones and thoughts become more fierce and judgmental. She says, “SUCK IT UP!” and “IT’S NOT THAT BAD! THINK OF ALL THE PEOPLE DYING FROM PAIN RIGHT NOW!” Now and then, she reminds me to take my Tylenol and Advil. But, when the pain gets tough again, she’s right back in her judgmental state. She reminds me throughout all of this, “Don’t tell anyone you’re in pain! You don’t want to bother anyone and you don’t want them to think that you’re always sick,” and “Make sure to say that you are sorry every 10 seconds!”

All the while my pain is climbing from a 3 to a 5 to a 7 to an 8.

When the pain finally gets to 10, my Little Chronic Illness Ableist Friend screams into my ear “OKAY! HOSPITAL TIME! BUT DON’T TELL ANYONE THAT YOU’RE GOING.” My Little Chronic Illness Ableist Friend is worried that I will get in the way of my friends, that I will hurt my friends, and that my friends will think that I am not independent because I asked them for help. My Little Chronic Illness Ableist Friend hates the fact that I can’t drive. She wishes I could drive so that I didn’t have to rely on anyone to get me to the hospital. She loathes the fact that I can’t drive.

I don’t loathe the fact that I can’t drive. I don’t loathe the fact that I have a chronic illness.

I feel better now that I have reclaimed my Little Chronic Illness Ableist Friend. Maybe now, the next time, I can decide how I need to manage my chronic illness and not let My Little Chronic Illness Ableist Friend control me.

Originally posted on Chronic Illness Girl.