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.
In March 2011, I was lucky to be among a group of ~30 people who convened in Racine WI to discuss a national agenda for supporting families with a member with intellectual and developmental disabilities. Why? The role of the family is central to individuals with intellectual and developmental disabilities across the lifespan. More so than ever before, the family provides medical, behavioral, financial, and other daily supports — these roles are vital and often policy and practises do not recognize them, support them, fund them, etc. As families become the singular central support unit, policy has to emerge to recognize the validity of their position and families have to become equal partners to the policy dialogue.
I’ve attached the full document from this event. It is worthwhile reading. In particular the statistics are highly relevant and we should really consider how this impacts policy on a go forward basis
- In the US there are more than 4.7 million citizens with intellectual and developmental disabilities.
- More than 75% of those are living in the community without formal disability services, relying on families for various levels of support
- Of the 25% receiving services, over 56% live with their families (in some states that is 80%)
- 28% of children with disabilities live below federal poverty levels (compared to 16% without disabilities)
- Parents of children with disabilities have lower rates of, and diminished opportunities for, employment and advancement than parents of children without disabilities
- Over 58% of parents/caregivers spend more than 40 hours a week providing support for their loved ones (beyond typical care) — 40% spend more than 80 hours a week.
- Long waiting lists for services and the increased lifespan of individuals with I/DD have contributed to a growing number of individuals with IDD in households where the primary caregivers are themselves aging.
The systems of old evolved out of an institutional model. The systems of today have to be designed to include a focus on models supporting families through the lifespan of their loved one.
“Disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to enjoy the opportunity to live independently, enjoy self determination, make choices, contribute to society, and experience full integration and inclusion in the economic, political, social, cultural, and educational mainstream of American society.” The Developmental Disabilities Assistance and Bill of Rights Act, 2000
I encourage you to read the full document and start a conversation: SUPPORTING FAMILIES Wingspread
About half of us were able to make it. Yes, believe it or not what you see here is only half of us! It was a wonderful day, a lovely event and people are talking about it. I hope that when everyone thinks of the day they will remember it as David’s birthday but I think that already the idea that it was David’s birthday is evaporating and people are really remembering it as a family reunion. That key here is that it was a memorable event because it was a family gathering with David included actually at the center of the gathering.
- Back in the day — before mom and dad passed away — everyone used to come “home” for the holidays. Brothers and Sisters and their spouses and their children would come to the house and spend time there. There were so many of us that families would come in rotation. Even still, come they would. Now that our parents have passed away, we don’t have that family “hub” that we used to have. It occurs to me that for the majority of our family we have not seen each other in any major grouping since those days. And they were long ago — before 1994, 1996.
At the beginning of the party we took a moment of silence in quiet contemplation of all those who have passed. Our parents. Our brothers and sister. Our grandparents, aunts and uncles. Looking around the room the “little ones” who used to sit at the “children’s table” are all grown up with their own little ones. It was shocking to me that we are now the elders!.
My nephew Christopher set up music and a playlist with his iPad. He was the “DJ” for the event. I was standing next to him and he said something like “I dont know anyone here. I’ll bet others don’t. Are you going to get people talking?” And so we began “calling” — getting the little kids to come up and answer questions like who can do spock fingers and other recessive gene traits. More than 50% of the people in the room have light colored eyes. 30% can do a clover leaf tongue. And the blonde spot at the back of the head is more prevalent than most let on.
The best part of the day of course is that David loved every minute of it. He loved being the center of attention!
He loved having people read to him… Several people read David his birthday cards…. He loved being the center of the photos, although his fave is with his girlfriend Gina. Every time David is looking away in the photo, follow his eyes and you can see that they are glued on Gina. He loved dancing with his brothers and sisters (and Gina!)
And he loved the after party. The after dinner.
The night time remembering the party.
Wishing us all many more days like this.
Here’s to David Joseph, Happy Birthday, old man :-).
My mother was my role model. Often times this is the case for daughters. But especially for me. I tagged along everywhere with my mom. I was the last one home and my mother finally had some time to get out of the house (after raising 10 kids) and she bundled me up and I went along with her. I remember going to the Board of Education. City Hall. Harrisburg. Washington DC. Picketing. Marching. Meeting. My first school room was a pilot school room started by my mother. A trip to the grocery store also included a trip to other mothers’ houses — where my mother brought them groceries. A walk to the corner was taking the policeman a cup of coffee. My mother was civic minded. Involved. And a visionary leader. When it came to her passion — equal rights — she was unequaled in her foresight, ability to engage and encourage. She was understanding and hope. In short, she was an astonishing woman. I aspire to be a fraction of what she was. I have a long way to go.
When it comes to my brother David, my mother was my role model. To be good in my job as his advocate, I tried to do what I thought she would do. What she would have wanted. And this has taken me very far.
But in reframing how I see and treat my brother and subsequently reframing how others see and treat him, my current role models are self advocates I have met.
Let me give an example. My brother David requires foods that have been very finely chopped. When we go out (conventions, other people’s houses, meetings, restaurants) they do not typically have finely chopped food. Or soft moist food. His food comes. (Sometimes i ask the kitchen to chop it but then it comes back not chopped enough anyway) So, the food comes, I lean over and chop it up. I taste it to see if it’s too hot. I take food from my plate and give it to him. I never thought anything of this. Sharing food, plates. That’s what we do in our family. (I remind you, we had 10 kids and a lot happened over food!) Anyway, my friend was sitting with us at one event. She happens to have Cerebral Palsy (as does my brother). She said, hey Kate, you want to chop up my food next? You want to taste it? And I looked at her and she was totally jerking my chain. I had to step back and look at myself and say, hey what am I doing? Would I do this to her? If she wanted me to cut up her chicken, I would but I wouldn’t do it like I was feeding a baby. And that’s what I was doing with David. I acknowledge it takes a while to break a habit you’ve had for 40 years. But it was a self advocate who helped me take a step back and look at myself and start the process.
Self advocates are teaching me the presumption of communications. That everyone “talks” and we have to learn how to listen better. That its okay to ask a person how best to communicate with them. Self advocates are helping me be more patient which is hard to do in a world of 30 second sound bytes. Self advocates remind me daily to be inclusive — meaning to actively engage everyone in the conversation and not just allow them a seat at the table. Another friend stops me from saying “hon” and consistently reminds me “I have a name, use it.” and I noticed that sometimes staff around my brother don’t use his name like he is an interchangeable object du jour and I so get it! And in a new field where everyone seems to hug, its my friend James (he has said i can use his name) who reminded me just yesterday that many individuals with developmental disabilities have been victims of sexual abuse and we need to think twice about all this hugging. In fact, it was James and his reminder that pushed me to write this blog! (Thanks James)
Now I want to confess that all the things I’ve been learning require a change in my behaviors. And that takes time. But, I’m working on it. I’m working on it. So, my friends, keep telling me, keep sharing, keep showing. I’ll get there.
Parents have done a great job making room for their children. But it’s their children who are showing me that they are not children for life. Self advocates, thank you.
To know a man, walk a mile in his shoes? We cannot truly walk in the shoes of self advocates. We cannot. But we can sit next to them as they recount their story. Listen and watch and learn. And allow their experience to change our path. A journey starts with one step and I am on the road!
It’s called a movement when it’s moving 🙂 Here we go!
Yours in Community,