Family and Interdependent Lives
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.
Join the National Agenda For Supporting Families
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
David’s 50th Birthday Party!
On St Patty’s Day we celebrated my brother David’s 50th birthday.
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 :-).
Kate and Dave soon to be at Temple University: Lecture Series on Disabilities
Pleased to announce Dave and Kate to host Mini Course/Lecture Series on Disabilities Monday March 28, 2011. Look forward to seeing you there!
Register now for this informative and valuable presentation.
About the Event
A family-oriented discussion about social networks for individuals with intellectual and developmental disabilities. Individuals with intellectual disabilities, family members, professionals, and allies are welcome.
Kate and David Fialkowski will share their journey from “typical” siblings to when one sibling takes on the role of caregiver or overseer of the other sibling. This frank and sensitive discussion will include the transition from parent-led support to sibling-led support and navigating the process and outcomes of that role change.
During the afternoon, a select panel will discuss the development and leverage of the social network. Everyone is encouraged to attend including “Person-Centered Circles.” Questions and open sharing of ideas from the audience will be encouraged.
Kathryn Fialkowski and her brother David grew up in inner-city Philadelphia. Kate has spent her life advocating for disability rights and inclusion. She and her family have led grassroots activism in the right to education, community living, and employment for individuals with developmental disabilities. Kate is currently a Joseph P. Kennedy Jr. Public Policy Fellow placed at the U.S. Department of Health and Human Services Administration on Developmental Disabilities (ADD) in Washington, DC, working on grassroots strategic planning and self-advocacy organization.
Registration and Location
2 part session
(with lunch on your own)
Part I: 10 AM – 11:30 PM
Part II: 1 PM – 2:30 PM
Registration begins at 9 AM.
Event is FREE. Registration required.
* You MUST register NO LATER THAN March 11 if you are requesting accommodations (Braille, Sign Language Interpreter, etc.).
Register online OR call 215-204-1356 (voice/TTY) and we will send you a registration form.
Temple University Main Campus
1755 N. 13th Street / Room 200A
Philadelphia, PA 19122
Q: Does Safety Supersede Civil Liberty?
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.
School puts GPS tags on backpacks
GPS used to track truant students