Note: From the Temple Institute on Disabilities website… Photo, Presentation, and link soon to be added.. Thanks to Celia Feinstein and Temple for the opportunity to present sibling perspectives. Thanks also go to sister Mary Bisignaro and niece Camille Bisignaro for coming to represent the family.
Philadelphia, PA—The Institute on Disabilities at Temple University hosted its Mini Course/Lecture Series event—”Siblings: Moving Beyond the Parent/Child Relationship”—on Monday, March 28 featuring speakers Kathryn Fialkowski and her brother David presenting to a standing-room-only audience of more than 110. A Philadelphia native, Kathryn, and her family, has led grassroots activism for the right to education, community living, and employment for individuals with developmental disabilities. She 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 in Washington, DC, working on grassroots strategic planning and self-advocacy organization.
A highlight of the day was the presentation of the First Annual Fialkowski Disability Studies Award to two Temple University graduate students.
In the morning, Kathryn and David shared their emotional journey, moving from a “typical” sibling relationship to one where Kathryn became the caregiver. During this frank and sensitive discussion, Kathryn offered insight about transition from parent-led support to sibling-led support and navigating that process.
In the afternoon, a select panel of siblings of people with intellectual disabilities discussed their experience into their role as a sibling and that of a caretaker.
During the event, the Fialkowski Disability Studies Award was presented to two Temple University Graduate students for “work exemplifying the mission and vision of the Institute on Disabilities at Temple University and for demonstrated excellence in the areas of community inclusion, integration and disability rights.” The Award is given by the Fialkowski family “to assist young leaders in furthering their growth and commitment to the field of disability—personally, academically or professionally.”
Recipients of the first annual award were Lindsey Martin and Christopher Wickman. Lindsey Martin, who will receive a Master of Fine Arts from Temple University’s Master of Arts in Film and Media Arts program in May 2011, has been a graduate extern at the Institute for several semesters. She has worked with a number of project managers at the Institute and in doing so, has learned a cross section of the disability field, from criminal justice to leadership development to inclusive education. As a final project in her Disability Studies class, Lindsey co-produced Every Speed, an experimental short documentary that explores ideas about body movement, technology, and dependency. The film has been screened at the Society for Disability Studies Conference in June of 2010 and at the Association of University Centers on Disabilities Conference in October of 2010. The film was also a recipient of Temple University’s Distribution Completion Grant.
Christopher Wickman will receive a degree from Temple University Beasley School of Law in May 2011 and has been an advocate for people with disabilities during most of his secondary education, beginning with his time serving on Executive Board for the Council for Students with Disabilities. During his tenure as Graduate Extern at the Institute, Chris worked with the Policy/Law assistant director to help research the impact on people with disabilities of proposed policy changes in areas such as health care, education, waiver and other topics. During the fall 2010 semester, Christopher hosted “Embracing the D: The DisAbility Civil Rights Movement and Crip Culture,” which presented a history of the disability civil rights movement, the current disability culture, and current social and legal issues important to people with 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
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,