What is a “Quality Life”?

David and I keynoted at the Pennsylvania IM4Q training in Harrisburg yesterday. (well, I keynoted, and David has a bad cold but joined us for lunch). Thought others might be interested. We welcome sibling thoughts on the subject…

IM4Q Harrisburg 07-2011

Taking the role of David’s primary advocate has been challenging and often confusing for both of us.

• Who am I now? Am I a sister? A friend? A parent? A case worker?
• How can my “power” be used to support David’s willpower? Does it override his? Am I overstepping? What choices are David’s and what choices are mine?

These questions are very profound and get to the heart of civil liberties, civil rights, and personhood. Great philosophers have struggled with these questions! Thomas Jefferson, Martin Luther King Jr, Pope John Paul II. I mean, these are serious brains who’ve struggled with and posed these questions through the ages. But for us, they are not just intellectual questions. David and I HAVE to work out the practical answer to these questions — our daily lives depend on it!

In thinking about my role, I think it comes down to this: Does my role enhance David’s “quality” of life?  Notice, I don’t ask if he is HAPPY. I ask if he has a quality life and does my role contribute to that.

What is the Definition of a Quality Life?

Pope John Paul II said “People with disabilities must also be enabled to participate in social life as far as they can, and helped to fulfill all their physical, psychological and spiritual potential.”

So what is a quality life? It is about participating in society and striving to reach your full potential.

Our Beginnings

We grew up in a row house in Philadelphia with 10 children, 2 adults, 3 bedrooms, 1.5 bathrooms and a dog. Our mother and father knew they were looking at the end of their lives and made the decision to place David in a community living arrangement. David moved to a house with 4 other men. 5 men, 3 bedrooms, 2 bathrooms, 2 stories. A big improvement ! (Even today, I measure my quality of life by my wait time to get into a bathroom )

Our mother visited every day and David came home on many weekends. Our parents aged and eventually my father passed. And just before our mother went in for heart surgery, she took me aside and made me promise that I would never move David. That I needed to respect the fact that the people in that house were his family. So I never even thought about moving David. To do so would have been to defy my mother’s deathbed wishes. She had the best intentions. And she was right, in theory…

But we didn’t factor in change…  I didn’t visit every day. In fact, I lived in France. David went from daily family involvement to minimal involvement. Staff turned over. A couple of the roommates changed. And eventually I started noticing some big changes with David. The most noticeable of which was that David stopped sitting on the couch and started scooting on the floor. He refused to walk anywhere and so he was getting pushed in his walker everywhere. We thought shortly he would not be able to walk anymore. David was afraid! The house was crowded. He managed to lower his risk by lowering himself to the floor! Finally I had an epiphany. This lightbulb appeared over my head:

You are here to serve David not your mother!

I knew that something had to change and we looked for a new house for David. David’s new house is a single story, fully accessible rancher. 3 people, 3 bedrooms, all on one floor. By the way, his roommates happen to be two women! He has a very beautiful yard. He has his own private space and his bedroom has enough room for his own sitting area. Once David moved to this house, there were several changes to his behavior. First, David has started walking more, longer, and more frequently — independently meaning alone and without a walker. He gets up and goes to his bedroom when he wants some personal space. The second thing is that David started vocalizing more to express himself with words! As children,David used to speak. Imagine, there were 10 children and 2 adults speaking to David every single day. He used to speak. He could say our names, hello, goodbye, ask to drink and eat, and various other things. He stopped talking all together when he went to school. Infrequently he would make sounds like words forming in his throat. It was very rare. To hear David expressing himself with his own voice! I can’t tell you how overwhelmed I was.

But, while a good home contributes to helping David fulfill his potential, is it enough?

Taking Risks

Even still, every day I am worried. When the phone rings and the provider calls I hold my breath for their first words. Hopefully they are “everything is fine.” And if everything is not fine?

I received a phone call once. They did not say “everything’s fine.” instead they said “Davids in the emergency room.” I don’t recall the drive to the emergency room. I do recall seeing David with a gash on his head from front to back. I was there when they stapled his scalp and held his hand when he screamed in pain. And I saw red in my eyes and tasted copper in my mouth.

A part of me wants to bundle David up. Keep him safe. Tuck him away someplace so that no one will hurt him. But I have to acknowledge that David is not a baby. He is a man. And he must participate in society and fulfill his potential. So, we have to take risks.

• David goes to baseball games.
• David takes long car rides — like coming here to Harrisburg.
• David goes swimming at the YMCA.

All of these things are activities with statistical risks: drowning, falling, car accidents. The world is rife with risk! But David has become a member of his community and has grown as a person through these risks.

Helen Keller said: “Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved.”

To  protect David from risk is not kindness. For David to go into the community and try things. See if he likes them. See how he grows from them. Potentially fail. Potentially get hurt?

To Risk? This is to live.
I have to allow David to live. And through his doing so, he has and he’s become a man of character.

Adding Value

He might be a man of character. But if David lives his life to his full potential, is he a man of worth? Does David “count?” Does he matter? A person with more severe disabilities, what is their worth?

This year was the first time I personally met people who thought of people with developmental disabilities as objects. Who saw them as pillows to be fluffed or taught to fight like pit bulls. There are people who believe that people like my brother are nothing but an object and treat them accordingly. These people focus on what David cannot do. They describe him like a checklist, like a diagnosis. what are his toileting skills, his vocabulary, fine motor skills, hours of support required, ambulation. They expect nothing of David.

In our time, in our beginning, there was nothing to expect. In our beginnings there was only the option of institutions, being hidden away. People were locked in rooms and even basements. Hidden from society. Low life expectancy and no life. To stay with the family, to be outside in the daylight, on the porch — well, that was considered something extraordinary back then.

If going to a baseball game or out on a boat is “better than nothing” or “better than sitting at home doing nothing” — Well, when we measure “quality of  life” as better than nothing? It’s just wrong. In one of my careers, I was an expert on quality. All those metrics. We call it a baseline. The expectation to which we measure things. For people with more significant disabilities… to have a baseline of  NOTHING?

But, this man, my brother David

• was involved in the PARC court cases and was in the first schoolroom in Philadelphia for people with severe disabilities — (predecessors to IDEA)
• marched on City Hall and Harrisburg (innumerable times)
• survived the death of 2 parents and his brother, Walter
• lives in a house with 2 women.
• goes to the YMCA, has memberships to the Art Museum, Aquarium, Longwood Gardens.
• loves the Phillies and gets tickets to baseball games.
• loves music especially jazz and blues and oldies and especially live music
• and he has done 5 presentations this year
• he has changed the world for countless others.

Don’t you think that’s SOMETHING? I’d say David adds a LOT of value! He is a man of substance. We must acknowledge the contributions of our friends and family with intellectual and developmental disabilities. We have to call attention to it. And we have to thank them for all that they have given to us: their family, friends, and community at large. And we must raise the baseline of expectation. We should not measure our success based on “better than nothing” but on “achieving potential.”

Goethe said: “If you treat an individual as he is, he will remain how he is. But if you treat him as if he were what he ought to be and could be, he will become what he ought to be and could be.”

One thing I learned this last year is the difference between the two perspectives is in our own minds, not in the capability of the man.

Hope and Action

To live life to full potential. In society. To risk. To grow. That is a quality life. We cannot stand in the way of this. And, to be David’s primary advocate I have to do more, I have to encourage it, foster it, fight for it. When successful, the sun shines brightly…

Martin Luther King Jr said “Let us hope that the dark clouds of prejudice will soon pass away and the deep fog of misunderstanding will be lifted from our fear-drenched communities, and in some not too distant tomorrow the radiant stars of love and brotherhood will shine over our great nation with all their scintillating beauty.”

 

END NOTE: Session participants know that one additional segment was in the live speech… a discussion of technology and self-determination, inclusion, and social networks. As I’ve done other blogs on those topics, I omitted them from this material.

Postscript

There was a man who spoke to me at the end of the speech. He said, “I’d like to meet your brother, he sounds like quite a man.” At lunch David, his support staff and I were walking down the hall. The man and a few other people came up. I was able to introduce the two.  The man took my brothers hand and told him how he heard all about him this morning. He recounted what he heard and David’s accomplishments. He thanked David for the value that he contributed. The rest of us? We were there to bear witness to humanity at its best.

Update on the Sibling Mini Course at Temple University

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.

April 2011

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.

From Me to You — Sibling to Sibling: Talking about the Big Taboo

NOTE EXTRA RESOURCES HAVE BEEN INCLUDED!

Reader warning: if you are not a sibling or family member of an individual with developmental disabilities, stop reading. If you read the word Taboo, and you think “I shouldn’t…” then stop reading. If you see the word SEX and immediately shut your eyes, stop reading. If you are scared of reality and want to pretend it’s not there, stop reading. And if you’re just not ready for this topic, bookmark it… but come back to it.

This is a hard story for me to write but  it’s so important, I’m going to share it with you. My brother David was already living in the community (not with my parents). He was home visiting. One Saturday morning I was helping my mother wash David and get him dressed. It was labor intensive. David and I are about the same size. Getting him into the tub and out of the tub is hazardous and my mother was showing me some safety techniques. She was sitting on the toilet and I was on my hands and knees by the tub washing David. My mother said ” you know, whenever you have David, you have to check him.” I thought “what the heck does that mean?” but I said nothing and didn’t even look up at my mother. In my gut I knew this was a conversation I wasn’t ready for. “You’ll have to check him,” she repeated. And then, in gentle detail my mother explained that David was likely to be the victim of all kinds of abuse including molestation and that one of my hardest jobs (among many hard jobs!) would be vigilance on this topic… which would include checking him for all kinds of signs of molestation (delicately, sensitively, and while talking/explaining). UUGH. Talk about a difficult topic to have a) in general b) in such a delicate setting and c) with your mother. We hit the trifecta.

If you are an adult sibling thinking that maybe one day (or maybe that day has already come) you will have primary responsibility (advocacy, care giving, guardianship,  etc) for your sibling, then this is a topic you, too, should talk to someone about. It’s “taboo.”  Perhaps the biggest taboo there is. We don’t discuss it. If you’re like me, you’d rather go to the dentist than discuss it. Other people don’t want you to discuss it with them. Even still, they are, perhaps, the most important conversations you can have. They are also frightening, freaky and, by instinct, you might want to avoid them all together. Nonetheless, they are absolutely necessary to consider.

• Sexuality. Let’s start more generally with sexuality. Don’t we all hate to talk about the sexuality of a sibling or a parent? It goes into the category of TMI (too much information). However, sexuality is a normal part of human existence. Just because your sibling is an individual with developmental disabilities does not mean that they do not experience sexual urges. Teaching sexuality teaches appropriate behaviors and can also give the individual tools to protect themselves from unwanted sexual advances. Also, I don’t know about you, but I was more likely to discuss sexuality with a sibling than I was to discuss it with a parent! For additional thoughts, here is a workbook on having the conversation. Also, the ARC has produced this position statement on sexuality. Check out the pdf.
• Reproductive Rights. A harder subject. For those of you with sisters and daughters, it is even more difficult. It crosses over between women’s rights and disability rights. A touchy subject full of moral dilemmas. This covers controversial subjects such as sterilization, selective abortion, and genetic testing. This is a totally private issue but one in which the ethics and individual rights absolutely must be considered. You need to have this conversation with yourself before engaging others in the conversation. Read about it. Develop a perspective and why you have your perspective and then engage others in your family in the conversation. Most importantly you  must engage the individual in the conversation. Here are some general facts re reproductive rights.

Why have these conversations? Probably more than any other reason, as T’d up at the beginning of this blog, we all should be concerned about SEXUAL ABUSE. Here is a frightening statistic:

AMONG ADULTS WITH DEVELOPMENTAL DISABILITIES, AS MANY AS 83% OF FEMALES AND 32% OF MALES ARE VICTIMS OF SEXUAL ASSAULT. Johnson, I., Sigler R. 2000. “Forced Sexual Intercourse Among Intimates,” Journal of Interpersonal (see other stats here) The key to dealing with abuse is prevention (Prevention is especially important because 90% of abuse does not result in treatment for individuals (Baladerian, 1991). Full article)

 

 

 

 

 

Advice for undertaking this topic:

• Don’t take all topics (sexuality, reproductive rights, and abuse) at once. This is a difficult arena and can overwhelm you. Even writing this short blog is overwhelming to me !
• Read, read, read. Decide your individual perspective. Understand why you have it. You have a right to your perspective. However, that does not necessarily give you the right to act on your perspective.
• Find someone with whom you can discuss each topic as you choose to undertake it. You are not alone. Use your network. Contact your local protection and advocacy organization (
  http://www.ndrn.org/
  ).
• Talk to the local University Center of Excellence (UCEDDs). I spoke with Katie Arnold… she reffered me to the Sexuality and Disability Consortium (SDC). SDC has grown as a collaboration of self-advocates, faculty, clinicians, community educators, researchers, and graduate students from the Institute on Disability & Human Development at the University of Illinois at Chicago, Illinois’ University Center of Excellence in Developmental Disabilities.  The mission of the SDC is to provide research, advocacy, training and education to support people with disabilities to enhance healthy sexuality and relationships.  The SDC’s primary goal is to promote best practice approaches for people with disabilities, families, professionals and policymakers, with a focus on people with I/DD.  Their website is  
  http://www.idhd.org/SDC.html
  
• Contact the Sibling Leadership Network and see if they know of someone in your area or someone online you can talk to. 
• This can be uplifting. Sexuality can also be about the power of rich and meaningful relationships. Read this great resource: the IMPACT feature issue on sexuality by the Institute on Community Integration (UCEDD) & Research and Training Center on Community Living at the University of Minnesota. 
  http://ici.umn.edu/products/impact/232/232.pdf
  .  It includes articles by self-advocates, parents, professionals, and lists a lot of good resources. 
• As always, knowledge is power. Prevention is a pre-requisite. Vigilance is necessary.

Yours in Community, Kate

Sanity “Moments of Truth”

When I worked in business, we had these things called “moments of truth” — the moments when the business “touched” the end customer. And that touch — regardless of who did it, told the “truth” about the company. About how they work, what they value, how good their processes are, how flexible they are dealing with problems, etc. These “moments of truth,” through time, meant that a business could be a raging successl or suffer horrible losses because of how in tuned they were with their end customers.  As times have changed and we’re now well into the “Information Age,” we have 1000 ways to learn about those we serve and various means to maintain this information over time and build upon it.

“Customer-engagement is critical for the success of an organization and in a knowledge-driven economy, the power of information cannot be underestimated. ” (Fast Company)

“The key to achieving emotive success is understanding the customers’ needs and expectations. By doing so, companies can identify the most important interactions – “the moments of truth” – and prioritize delivery accordingly. The IBM customer experience framework integrates four key dimensions: emotive performance, products and services, tactile performance, and channels and touch points” (IBM)

I’m in a new field, now.  A field in support of families and individuals with developmental disabilities. Many in this field are supposed to be ”advocates,” who must manage needs and expectations on both sides (individual/system) and must do so with an emotive connectedness.  As in business, there are some who are in touch with the individuals that define their work and there are some who are just  in touch with their work — the day-to-day tasks without sight of the people they are impacting. There are some who are, unfortunately, removed from the day-to-day lives of these individuals. And then, like customer-service agents and sales people in business, there are some who got too close to the fire for too long and burnt out.

I have the best job in the world. Every single day I have the opportunity to talk to an individual or family member. I do not have the luxury to talk only to the ones I know. Or the ones I like. Or the ones who share my opinions and beliefs. The phone rings, I answer. Someone passes me on the street, I talk to them. We’re hosting listening sessions and I work to get people with various perspectives out to talk. “Let’s hear it, let’s hear what you have to say, what your life is about, and what you’re concerned about.” And these are all moments of truth.  Two observations:

• We’ve stopped listening. Just like the political landscape of today, we’ve stopped listening to what people are saying. Instead we paint them in a white hat or a black hat and put them in camps “for” or “against” our perspective. We need to listen. We have got to have meaningful dialogue about difficult topics. In business we say it takes “5-why’s” to get to the root cause of an issue.
• We have a generational divide. The “old-timers” were here in the beginning. Pioneers of the movement. They remember a time when there was nothing. No rights to anything. There are the “new-timers” who know nothing other than having rights. For the new-timers, IDEA has always been around. The old-timers fear that things can go back to the way they were before. The new-timers don’t know there was a “before” — its only theoretical.

Sanity Rally on the Hill

Last week I met a guy at the bus stop named “Joe.” He said he was in the Special Olympics and the last soccer game of the season was this weekend. I asked if he was sad the season was over. “Yes, really sad,” but he was smiling.  ”You don’t look sad,” I said. “Well, that’s because Basketball starts next weekend!”

We continued chatting on the bus ride. Joe lives at home but has a job 5-days a week in food services with the Marines. He goes to the neighborhood diner on Saturday mornings. And in the middle of this conversation he explained that he was very afraid because he has a surgery coming up. He remembers a time when he reacted badly to getting a needle (kicked out) and as a result he was thrown to the ground, face down, with someone sitting on him and forcibly restrained. Hmmm. This conversation had a lot to digest. In one conversation, one person, we were trying to satisfy all levels of Maslow’s hierarchy simultaneously! Psychology, Safety… Self-actualization. 

We have to create opportunity for “moments of truth.” We cannot close off perspectives we don’t like. We must continue to talk. We must understand our common grounds. We cannot ever stop listening.

What’s your truth?

Challenge

Tim and Kate at the Shriver Challenge Kickoff

This week was full of challenges of various sorts…

The Administration on Developmental Disabilities hosted its first Envisioning the Future Summit Series in Philadelphia PA. On Monday people come to give testimony and on Tuesday Regional Stakeholders in the Disability arena stay to discuss opportunities and solutions. These sessions will be held again in 4 other locations over the next ~6 weeks. The important aspect of these sessions is to listen and frame up actions. Listening is insufficient. On Wednesday I stayed in Philadelphia and, as part of my Fellowship, I hosted a listening session with Self-Advocates. They taught me *how* to listen. How to engage and that it takes more than 3 minute speeches to understand someone’s life and begin to work through complex issues of disparate systems. The job of active listening is so much more than simply listening. Finally, today I ran the 5K in the Shriver Challenge — in memory of Eunice Shriver and all she has done in terms of developing policy, acceptance, social capital, social justice, opportunity and camaraderie for individuals with developmental disabilities.

I learned some humbling reminders this week:

Celebrating Personal Success after the Shriver Challenge

• All people have a name and they want to be called by it. To call them “hon,” “consumer,” “client,” “D-bo,” or anything other than their name is to eliminate their humanity. People must be acknowledged and their names must be used.
• All people want a future with loving relationships. People with disabilities who are on SSI feel that they are denied the right to marry because the women will lose their SSI benefits.
• All people are unique and require a certain amount of flexibility in their lives so that the life matches the individual. Systems that are dominated by hourly workers for support staff force individuals into lives where they live by the clock — going out at a certain time, coming back at a certain time, going to the bathroom at a certain time. To have food, bathroom use, television use, etc on a prescribed time is an institutional existence.
• All people are individuals and should be able to develop, explore, and expand their unique talents .
• All people deserve respect.

I guess everyone needs to be reminded of these facts occasionally. All of us need to challenge ourselves to think about the simple realities and find solutions despite of the complexity of the problem. We need to challenge ourselves not to give up and challenge each other to try harder, give our all.