from the Desk of Kate
Almost all of my friends, at this stage in life, have had to come to terms with a loved one in care. It may be short term care (hospitalization, rehab), long term care (nursing home), or perhaps life-long and permanent care. In thinking about care for another, I came across a wonderful essay by Hidle Lindemann (“Holding One Another (Well, Wrongly, Clumsily) in a Time of Dementia” found in Cognitive Disability and its Challenge to Moral Philosophy) where she introduces us to the concept of “holding another person:
There are times when all of us need to be help in our identities, even after we are old enough to do much of this work for ourselves. Indeed, some identities require others to hold us in them continually: I can’t be your wife if you stop being my husband, for example.
It occurred to me, reading this essay, that when we speak of care, we are often speaking of “holding” another. As I have cared for my family and they for me, I consider the different “types” of holding we have undergone:
- Holding as Grasping. Sometimes we grasp because we feel the other person slipping away. Grasping can be morally good or morally bad. “Good” grasping may be, for example, the safety net of catching your friends when they fall, of not allowing them to hit rock-bottom. There is a snapping back from the precipice. Grasping is holding in an active sense. My dear friend, I want to hold you here for a moment and remind you who you are, how valuable you are, how loved you are. But, I can only “hold you here” for a moment. People are not static, they are dynamic living beings. Grasp and hold too long and it becomes “bad” grasping. “Bad” grasping may be, for example, reducing the subject to an object such as “mine” or “you are nothing without me.”
- Holding as Accompanying. Sometimes when we care we hold on through accompanying. “Good” accompaniment may be, for example, the father who runs along side as his son rides a bike for a first time. Or the sister who sits by the bedside of her ailing sibling recounting the life narrative of the one in bed. Accompanying the person with dementia may be validating memories of a time long ago. Or for someone perhaps living with an altered reality of steroids, helping the person discern what is real and what is imagined. “Bad” accompaniment may be treating the fantasy as a reality (for example, is the doll a baby? and other case examples used in moral debates re dementia). Or “bad” accompanying may be, as Lindemann proposes, recounting the person as you wish he is rather than how he actually is. Accompaniment is temporary. I cannot go everywhere with you. And even if you are with me forever, we are not interchangeable. To get it right, accompanying is holding with an open hand not a closed fist.
- Holding and Letting Go. Part of holding a subject/object is, necessarily, letting go. Personally, I acknowledge that I find this to be hardest. I come from a family that says “goodbye” at least three times on the phone before hanging up. Wanting just one more moment with a loved one. Wanting to prevent anything painful coming to your teenager. Wanting to give security and prevent risk. We want to hold to be sure, to be certain, to be safe, to control the outcome. But ultimately we have to let go. We want to grasp and hold when we know we need to let go, but please just one more minute. And sometimes, more often than I like to admit, letting go breaks our heart. Letting go as your child rides the school bus for the first time. Or letting go when you pack him up for college. Or letting go when the father walks his daughter down the aisle,places her hand in the hand of another. Or, in the hospital, when the machines go silent and the lights go out — for the final time. Goodbye for now, my love.
I am surely not the only woman who cries every time I see the Pieta. (image Wikimedia Commons). On permanent holding, the one place I can and will hold you forever, is my heart. <3, you are always with me.
Yours in community,
From Kate’s Desk
I’ve lived in the ‘developmental disability field’ my entire life, which means even before the field became a field. I have no memory preceding the push, fight, and court cases forcing the issue of the ‘rights’ of people with <significant intellectual and physical> disabilities to live in their native communities, without incarceration (for the ‘crime’ of disability), free from forced segregation, excision, and warehousing. The field is part of my identity, part of my personal narrative.
The history of disabilities in America includes some of the following memorable scientific and sociological ‘progress’ from 1960’s through the 1980’s. For example,
- diagnosis and removal from the population — excision, sterilization, and eugenics and involved court cases such as the infamous Buck v Bell.
- separation with utility — experimentation to make the segregated population “useful” despite their segregation and “pay their way” which resulted in the National Research Act (Pub. L. 93-348), creating the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research.
- poster children — fundraising and monetizing the “pity product” to fund curative research (see the history of the Disability Rights Center)
- litigation for liberation and “mainstreaming” — Brown v Board of Ed and The Right to Education
- community and socialization — Olmstead and ADA or “Community Integration”
The Disability Field is a Disability “Rights” Field, litigious and subsequently political by historic reality. Over the decades, we’ve finely honed “professional” disability activists — self-advocates, family members, and amici who learn to speak politics with 2 minute testimonials, catchphrases, and passioned pursuit of federal and state funding to achieve “everyday lives” “just like us” –fighting for targeted funding for sufficient and appropriate supports so that they can be as independent as we are — radical autonomous, self-directing causal agents.
Over the course of decades contemplating our lives (my life, my brothers’ lives, and the lives of other family members as we all pass through life with some disability temporary or permanent, born or on-set.) through the looking glass, I find myself repeatedly asking a different question:
What does it mean if we assert the primordial truth, that we are all already human? No threshold to cross, no measurable hurdle to leap, no admission required. They are we. Already. Human.
The form of personhood commences with dependence and continues on in relation. At the same time, while being an individual self, the individual person is inescapably in relation to others. Thoreau’s experiment, after all, only lasted two years. We are not meant to live in isolation — touch deprivation, for example, can lead to a failure to thrive. Or, for a radically different example, U.S. Marines live according to the permanent brotherhood code, Semper Fidelis.
“Just like us” looks to life using Locke’s theory of rational autonomy and full independence. In this model, ‘person centered planning,’ ‘self-determination,’ and ‘social-capital’ focus and place heavy emphasis on utilitarian, efficient causal agency. The person standing alone. An emphasis on the individual, autonomous person. Empowerment of the individual. I acknowledge that we have objectified, erased, and deemed “eternal children,” people with developmental disabilities and it is justice to rectify with overt assertions of self-determination, competence, person-centeredness. Now, this is delicate and I’m probably not handling it with enough finesse. What I’m trying to say is that sometimes, just maybe, in our emphasis of one thing we forget the rest of the truth as well. And that’s what I’m trying to say … it’s time to look to a proper anthropology of the human person. Not an “exceptional” rights-based one. Let’s have human conversations.
For example, I hear again and again from all my friends — those with and without disabilities — “Loneliness and the feeling of being unwanted is the most terrible poverty.” – Mother Teresa (hat tip to NASDSP which is where I saw this quote). We must speak both of our individuality and our relationally. This is being a human person. They (who have been wrongly segregated) are we — already human, part of the human family. Welcome home.
I’m going to dare to acknowledge our truth: an unpopular truth. My brother and I live interdependent lives. (please, I’m not saying co-dependent) I, for example, live alone and yet every significant decision I make necessarily involves my brother. My brother, for example, lives in a supported living arrangement and every significant action he takes involves another. We both lead interdependent lives, the definition of that interdependency fluctuates through time. It is dynamic, not static, and it is ever-present in various measures. Separate from each other, individual to ourselves, and yes at the same time relationally interdependent. This is not because we are a “special needs family.” It is because we are family. Full stop. Family. It’s what we do.
That’s what this <revised> blog is about. It’s about being family. Interdependent (not to be confused with co-dependent). Self-in-relation.
Now, of course, let’s re-insert the political. What makes this an important topic of discourse? Overwhelmingly (as in 75-85%), of individuals with developmental disabilities live at home (U Minn, RISP). I submit that it’s time that we, in the developmental disabilities field (Alzheimer’s, TBI, and significant cognitive disabilities) start talking about navigating our very human and interdependent lives. Living within families. Giving and getting supports through family members or within the family homes.
I look forward to our conversation.
My brother, David is a habitual watcher. He was always this way. As children, I would sit and play and he would sit and watch me play. He was never interested in fictitious, symbolic, or representative things. Only real people, real interactions.
Over Christmas, I introduced David to the iPad. David and I played Virtuoso piano together. To sit and play piano together, this was really something. Through tapping on the screen, having tones emit, David found a way to interact with me and I with him. And each time I think about that day I think “Forty-some years, and that was the first time we had a “back and forth” conversation.”
Once I handed David the iPad, we tried a variety of “aps” or applications. Movies, iTunes, games, piano, AAC communications. Our roles reversed. I was the observer and he, the primary doer. David engaged with the surface of the iPad easily.
Historically, there have been many barriers to using AAC devices: (Source) This includes policy, practice, knowledge, skill, and access barriers. My brother, David, was impacted by all these barriers. Throughout his school years, barriers existed suggesting that his intellectual disability precluded the need for him to have AAC. The degree of fine motor skills precluded the capability to have AAC. The cost was prohibitive for our family to trial, and forget about buying (when the policy barriers precluded it). It was these same barriers that eventually made David a prime candidate for “Facilitated Communications.” Facilitated communications was considered a breakthrough method of communications for individuals who did not speak verbally. I was living out of the area at the time and I remember when they called me and put David on the phone and “he” said “I love you.” I was at work and cried like a baby. And then I thought, a) hey I have 8 other siblings and I know “us” — the first thing all of us do is tell a joke–we do not tell emotions! and b) who’s pressing the buttons?
So back to the iPad. Who’s pressing the buttons? No keyboards, no pens, no pointers, only a beautiful surface area. No requirements for fine motor skills. Can’t tap? Slide! Can’t use a single finger? Use your hand and swipe! ). Graphics? Traditional symbolic pictures sure, if you want them. But real pictures or even videos can be used instead! Audio? Synthesized voice? Sure, if you want it. But how ’bout real voice? Mom’s who record for their sons — you can “bend the pitch” so that mom’s voice now sounds like a male voice — you can record and yet give your child their own voice. It has an easy touch, crystal clear visuals, and terrific audio. And David can hold it in his own hands. It is light, portable. He can hold it. It can rest on the table. It can be his. For the first time AAC can be small enough and customizable enough to be “personal.” And the myriad of aps means that this device can be truly an external extension of David’s unique self. And still “standard” enough for others to understand and interact with him without a PhD!
I admit that I’m a steadfast zealot. Why?
Yesterday, my sister Mary and I had an iPad meeting with David’s provider. 8 people + David, Mary, and I. There were several people in the room who had not been present for the previous discussion and so, although David was taking a break out of the room, we decided to review the background for the meeting. I explained that Mary and I had thoughtfully loaded applications on the iPad that were specific to David, his potential likes (we all get bored or change our minds), and also specific to the way he uses his hands. For example, every ap had a very large surface area and therefore did not require finger pointing precision. Full-hand gestures would work equally well. If David were to place his hand on the screen, a response would happen. And the screen would also pick up micro-gestures: small, almost invisible movements in David’s hands. These micro-gestures might come from small twitches or they may also be David’s reaction and engagement with his environment. Also, through the applications — even non AAC aps — David could make choices about what he likes and doesn’t like (self determination!) and communicate that to you!
We sent around Koi Pond for everyone in the room to touch and feel. Touch the screen and “splash!” it is as if you traipsed your hand through the water of a pond. Around the table it went” Splish-splashing all along the way. David returned to the room just as the iPad came back around. I put the iPad in front of David and explained the koi pond. David had not seen Koi Pond before. I traipsed my fingers on the screen: splish-splash. I gently placed his hand on the screen (splash) and on top of his hand I tapped my fingers. I tapped my fingers on the screen: splish-splash. I left him and continued talking. David sat there. His hands did not appear to be moving and yet we heard quite a volley of splishing and splashing. Micro-gestures! Eyebrows raised all around the room (including me and Mary!)
Another application around the table: Pocket Drums. Thumping, bonging, Binging all around the room. Back to David. David had not seen Pocket Drums before. I tap the screen: Thump, Thump, Bing!. I place his hand on the screen: Thimp-thump. I tap the screen again: Thump, Thump, Bing! and leave him alone. We continue talking. Micro-gestures. Thump…. Thump…. Thump…. David smiles. He lifted his left pointer finger high in the air and dropped it. THUMP! He smiled. Everyone stops talking and watches David. He does it again repeatedly. THUMP THUMP THUMP. He laughs. He starts tapping all his fingers — individually! Thump, Thimp, Bing, Bong! David is laughing out loud and brings his other hand over and is playing drums. He is laughing, smiling, shaking his head — David LOVES it. And the room bursts out in joyous laughter.
We all calm down and keep talking. I pull out virtuoso piano. It can play a duet — a keyboard on each side of the screen. Something David and I had enjoyed doing before. I put it down in front of David. No one is talking. Everyone is watching. I tap C, I put Davids hand on the keyboard. F. C chord badly played by Katy. David hands move. Notes play and then he is agitated. He is shaking his head. Then his body. Then he starts yelling. David is one unhappy unhappy man! “David,” I say, “this is simple, you don’t like it so we can just push it away.” I push it away. He lifts his hands off and looks at it. Gives it a little push. He looks up at me, smiles, and relaxes. Everyone around the room has an “Oh” face.
That’s what I’m TALKING about: COMMUNICATIONS. Self-Determination, we have lift off!
Buy it! Buy TWO. Get on board the iPad train buy one for your child, family member AND one for a friend. It will be worth every penny you saved up. Get involved, get your school involved, get your provider involved. And, let’s get Apple involved!!!
Yours in community,
Yesterday I read a blog posting about a recent meeting re Autism and in particular around a group’s debate of using tracking devices. An overview of the situation discussed:
“An incredibly brave Mom, spoke so eloquently about her child’s death due to wandering. Shelia spoke for so many of us when she described how quickly an ASD child can disappear. Her son, like mine, had no awareness of danger and almost no safety instincts. To make matters worse, nonverbal ASD children are highly impulsive and cannot respond when searchers are calling their names. urged the committee to make safety an IACC priority — particularly by providing interested families with potential life saving track devices and to aid in the support and training of first responders, teachers and other community service providers.”
A couple of notes
- GPS tracking devices are readily available
- This request is for the government to pay for the tracking devices
- This could apply to adults as well as children
First, let’s talk about children. A parent can, today, purchase a GPS tracking device (a watch, an amulet, etc) to be worn by their child. Why? According to the US Department of Justice, 797,500 children (<18) were reported missing in a one year period of time, resulting in an average of 2,185 children reported missing every day! Should you get one of these devices? Perhaps. If you want one, it is a viable purchase. These devices are reasonably affordable. If you can afford an Xbox, Wii, Playstation, iPhone or other technological sensation you can afford one of these devices with the monthly payment plan. I’ve read that one of the best on the market is Amber Alerts. It includes an emergency button for the child to use (works also if there is a PA with the child and they need emergency help). It also includes online tracking ~$180 for he product and $20/month for the tracking service. With GPS devices, you can know where your child goes after school. You can know how fast they were driving in the car. It is a safety device as well as a feedback mechanism. As a parent, you have a right to know where your children are.
Now let’s switch gears. How bout when your children are adults? Should I get a GPS tracker for my brother, David? David is 48 years old. I’ve already introduced you to David. David has many wonderful qualities but an appreciation of danger is not one of them. He communicates in different ways than most of us and if you call out to him, he will not call back. Is it possible for him to walk into traffic? Yes. Will a tracker stop him from taking that step? No. David relies on staff support for much of his daily living. They should prevent him from walking into traffic (right?). Well, let’s talk about the staff. there is the risk of neglect. How long did he sit in one place in the house? Or a car? Is he being driven all over the place? Or no place? Could a GPS could provide all kinds of information/feedback? Yes. So, should I get a GPS tracker for my brother? I mean, the technology is there. Not only GPS but once you go there –technology providing feedback — you have to also consider that remote monitoring devices (video cameras, web access) are also really cheap now too. These cameras can even “launch” when they see motion detected. I could watch David at home and also use the GPS tracker to ‘watch’ him out of the house. Since all of this is available, if I don’t collect all the available information am I delinquent on my oversight responsibilities? What about David’s provider? Should they be tracking him their staff?
These issues are pertinent. They apply not only to David but also to those of you with elderly parents perhaps suffering dementia. Remote monitoring? Remote tracking? They could really ease your mind. I’ve really thought hard about this and then I realized the real question at the heart of this is:
Does the fact that a person has intellectual and/or physical disabilities, mean that we can deprive him of his civil liberties in the name of “safety”?
Let’s go to the Constitution. The Fourth Amendment explicitly gives a constitutional right to privacy:
“The right of the people to be secure in their persons, houses, papers, and effects, against unreasonable searches and seizures, shall not be violated, and no warrants shall issue, but upon probable cause, supported by oath or affirmation, and particularly describing the place to be searched, and the persons or things to be seized.”
Then there’s the Fourteenth Amendment:
“Section 1. All persons born or naturalized in the United States and subject to the jurisdiction thereof, are citizens of the United States and of the State wherein they reside. No State shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any State deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of the laws.”
Should we amend the amendments and add a clause that says “except when we know better, or except when the person has intellectual or developmental or physical disabilities?”
In the end, I acknowledge that we all have individual circumstances and I do not judge those who do what they feel that we must do. Only YOU can know the personal situation you are operating within. Even still, I would recommend that there are some questions to ask before you go there:
- Where will you draw the line? And where should the government draw the line. They may be two different things.
- Are we prepared to go back to the days of targeting individuals with disabilities and saying they do not deserve the same civil rights? This is how we justified institutionalization: for their safety. Or was it for our safety?
- Which leads me to the next question who are we really protecting? “him” or “me/us”? (is it so David is safer or so that I feel better?)
- Are we really prepared to say that the government can support tracking of individuals who have no criminal records? How ’bout ones who have records but there is no warrant? How ’bout kids have a history of being truant?
- Who should be tracked? Is it really the individual with disabilities on whom we need to collect data? Or is it on the staff, provider, situation, etc? (Read articles below… is it different if the school puts the tracking device on the bus or if they put it on each child’s backpack?)
A lot of things to consider. The jury is out on this. This is timely. It’s an issue being wrestled with by courts across the nation. Think about it. It’s important, relevant, and an example where technology is really testing our beliefs in the basic principles of being American.
When I was a small child, I went everywhere with my mother. Mostly we went grocery shopping. That’s what we told my dad: “going shopping.” Really we went to homes of other parents who had children with serious disabilities. My mom was a great resource for people — people who were housebound because of the needs of their child. I remember going grocery shopping and then “just stopping by” someone’s house while we were out. These were really check-up visits where my mom checked in on her friends, brought them much needed groceries, and had a cup of coffee with them. As a result my earliest recollections are of being surrounded by individuals with various significant disabilities.
I’ve never shared this with anyone, so it’s our little secret, okay? At some point I starting hiding upstairs and “practising” various disabilities. I would go blindfolded. Stuff my ears. Hop around on one foot. Not talk for a full day. My father caught me one day. I didn’t know he was there. I was blindfolded and had plugged my ears. I had advanced to multiple disabilities. He grabbed me by the shoulders and when I took off the blindfold it was quite shocking to look at him. I thought his head was going to pop off his neck. I could see it getting bigger and bigger like a cartoon. My instinct was “run for cover” but he still had hold of my shoulders. He spoke very quietly and slowly… “Jesus…Mary…and…Joseph…what…are… you…doing?” Stuttering I explained that everybody has some sort of disability and I wanted to be prepared when it was my turn. After saying a prayer, he “sat me down” to talk about it. He told me that he prayed that it would never happen. And if it did, we’d deal with it then but it wasn’t something any of us could prepare for. Just because they had Walter, they really were no more prepared when they had David. I listened to my Dad’s advice. I stopped practising. But, one thing I didn’t share with my dad that day was that from my first moment of conscious and reflective thought, I thought: “that should be me. ” That I was the one who was meant to have disabilities, not David. Statistically, the youngest of 11 children. My father 52, my mother 40 when they had me. What were the odds that *my* development would be more typical than David’s?
Guilt can stop you in your tracks, or it can propel you forward. You may be the primary caregiver, or you may be a sibling who has never even met your sibling with developmental disabilities. In either case (or anywhere in between) you may feel various feelings related to your relationship with your sibling. For myself, I have recurring feelings of guilt, and I work to deliberately manage through them. Here are a few tips that I have found to help me continue to move forward:
- Name it when I feel it. Ah, the guilty conscience. When I can name it, I can figure out why I feel that way and at least try to do something. I’m a do-er. I always feel better if I at least try to do something.
- What is it other than guilt? Don’t be afraid to dig deeper. What else am I feeling? Anger? Resentment? Frustration? Sorrow?
- Give myself permission to have the full range of emotions and don’t get angry with your self for not being your “best self.” My “best self… the vision of the ideal caretaker.. is my mother. Now that’s something impossible to live up to!
- Make sure your behavior is aligned to your values. Whenever I cross over the “value” line, I feel that in my gut right away. I call this the “gut check” and I always know there is something I need to do in my own behavior when this has happened. I remember the one day when I was in elementary school and my brother’s class was paraded across the school yard. It took me by surprise. The class never ever came out when everyone else was out. I was prepared at home, on the street, on our porch. But, I wasn’t prepared at school when the school kids started chanting the “R-word.” I did nothing. Paralyzed. I was sick with myself for, well, forever (gosh, it still makes me sick when I recollect it). That never happened again. I was never unprepared again. Gut check.
- Oh, I guess my last personal tip is: Confession is good for the soul 🙂 Hence this blog post! I feel better already! Share with others. It might not be within your family but you can always share with the sibling leadership network: http://www.siblingleadership.org/
If you are a parent with younger children, you might want to take a look at sibshops: http://www.siblingsupport.org/about/copy_of_index_html. Get your children talking to others in a safe environment. Like me, your children probably have things they would never confess to you.
If you have any recommendations to share with others, I hope you will post them here.
Postscript: You know, the upside to my survivor guilt?1) I believe that every life has value — mine would have no less value if I was born differently 2) In addition to value, I have the opportunity to give my life meaning. 3) I wake up everyday giving thanks for what I have .
Yours in community,