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
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,
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,
NOTE: Thanks to “Missy” who posted a question about working with direct supports professionals — balancing between trying not to upset the boat (upsetting the DSP staff) and standing up for the rights of your sibling. First, as my brothers Direct Support Staff will tell you, I do not have this figured out. But, I will share with you what I learned, what seems to work, and what still frustrates me. We welcome and encourage other people to comment.
Background: In our case, David is not personally responsible for hiring his own direct support staff. We work with a provider. The provider hires the staff, assigns the staff, there can be good matches and bad matches. And, of course, there is staff turnover. When you’re talking 24×7 supervision, that’s a lot of people. David and I made out holiday cards for 12 different individuals just for his residential care. There are individuals who come and fill in shifts. Temps. And then there are day program staff. I do not know who is with my brother at any given moment. I mean I don’t know which person is with my brother and often if I did know who, I wouldn’t know who they are. That is the frightening reality.
Speaking of the frightening reality, here are my top 3 daily fears:
- Fear of overloading “the system”. Too many complaints, you become just 1 big complaint and then you are completely ignored or humored.
- Fear of letting things slide. Wrong-doings swept under the carpet, then you haven’t done your job as an advocate. A little bit sliding all the time can snowball into an avalanche.
- Fear of retaliation. The worst fear is a concern that if you really piss off a direct support staff your sibling may suffer at their hands — either through neglect or worse, through specific actions. My brother is vulnerable, dependent on 24 hour support, and cannot call out or run away. For those of you with a family member who has more severe disabilities, more medically engaged…you know that an act of omission can have dire consequences.
Fear and Trust
I want to be aspirational. I work hard to live in continued hope of a fabulous future for my brother. The problems, however are in the “now.” And the consequences are tomorrow… when I have gone and David is alone.
Fear is the dark side of the lack of trust. Last year, I did some best practise research in a different state. I went to a provider who was really working community living. I wanted to see how another state and agency managed this best practise. I spent the day with all of the staff and shadowed them on their jobs. Finally at the end of the day we had a roundtable discussion. I asked: “As a family member, how can a person like me (in my role) work most effectively with people like you (in your role)?” Every single person sitting around the table said “you have got to let go of some of the control, the details, and trust in us.”
I reflected on this during the long drive home and repeatedly afterwards. They have a point. I don’t trust. Why not? The risk is too high. My brother, Walter, choked to death eating a peanut butter sandwich (he had known trouble swallowing — no gag reflex — and “shoveling” and was left alone in the kitchen with peanut butter sandwiches left laying out). I confess that I will not be able to suppress this fear. And this fear is exacerbated by the frequent anonymity of the staff on any given day. I try to find ways to manage the fear factor. Daily. I absolutely must concentrate on the positive.
What Seems to Work
The hardest thing is coming to terms with “least bad” reasoning. Let’s face it, if you have a loved one in any type of care facility or care program you are often faced with making “less bad” decisions instead of great decisions. I long for the time when our reasoning and decision making is aspirational versus less injurious. This is my hope for the generation coming of age in the next 10 years.
- When I can’t hope to learn all the staff, I have gotten to know the management and supervisors in charge of the day program and the residential program. I have their phone numbers on speed dial in my cell phone. I talk to them throughout the course of the year. Not just during planning meetings. I call meetings so that the IDT meeting is not the only chance to talk.
- I work hard to provide materials to let people get to know David. Last year I put together this little pamphlet for David’s staff so they could quickly get to know him (David Fialkowski, All About Me). It was good for temp staff. It worked for a couple months. So that’s something else I learned. What works is stuff that is standard, repeatable, constant. That’s what the “system” is set up for. My “try this try that” — doesn’t work. I used to be disappointed. Now I’ve learned that I need to do things that can be reproduced, not just for David but for other individuals who are served by the same provider.
- I constantly pick and choose my battles. This is relatively new. My mouth was on auto-pilot: see something, say something. I had to learn (still learning!) to automatically filter and prioritize. I prioritize based on a) most important first (health and safety) b) treating David like an individual with self determination c) things that can help the other individuals as well as David. This filtering leaves me unhappy. There are battles I swallow like the fact that the day program building management asked them to ride up in the service elevator. Or that the office doesn’t have a wheelchair button to automatically open the door (why does it need one, there’s always staff with them?)
- What could I do better? I could make more of an effort to get to know the people around David. But, what would be even better is if there was a circle around David so that it wasn’t just me. More people calling his house and asking “who am I speaking to? how are you today? how long have you been working with David? do you have children? how long have you been working in the field,” etc. I just don’t have enough hours in the day. I just about manage asking about David. As I mentioned in a previous post, everyone needs a circle. Share the load, rotate the calls. I hope you have one! I mean, wouldn’t that be a great idea: to set up a calling circle? Rotationally call on each other’s families? Use a contact database like sales people do… maybe even call people who are in “crisis” and check up on them and their care … but I digress….
Treasure Those Who Work
There are plenty of support staff who do a great job. And when you find one, they are a gem. My brother has had some staff stability in the last few years (since he moved to his new house). For the moment, we have staff who’s concerned about David in a long term basis. We form attachments as a family. We can invite these people to accompany David to family weddings, professional events, etc. And once there is some staff stability we can start talking about things like self determination, using the iPad for communications, going places specific to David’s likes, hopes, dreams.
What’s YOUR Situation?
What have you found? What works? How do you keep an open dialog? Do you know your DSPs? Please share, we can all learn from each other…
Yours in Community,