One of our artists: Katlyn

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My name is Katie Pityer. Growing up I have learned to deal with Bipolar Disorder,  a Borderline Personality Disorder, Post Traumatic Stress Disorder, Insomnia and an Eating Disorder. I have learned that Coping Skills need to be a very big part of my life and my recovery. The greatest and most important coping skill, the one that I rely on the most is Art. Whether it’s painting; creating clay; ornaments, figurines and jewelry; making all occasion cards; sun catchers; coloring inspirational coloring books or origami, they have all helped me to understand myself better and keep me on the road to recovery.

Art is the one thing I can immerse myself into and nothing else in the world seems to matter. It gets me through bad days, anxiety and panic attacks and many other unpleasant situations. When I am painting, I want to make it fun and inspirational; whimsy is a big part of everything I do. My clay work is inspired by my favorite things, like animals, items and words. I also like to use the holidays to inspire new and different designs. The cards I create are mostly inspired by the holidays and the people that are close to me. I make them so that each individual can personalize them and add their own special touch.

Art has definitely played a large role in my recovery. It lets me be creative, as well as gives me a way to express myself through my imagination. In fact, I can’t imagine my life without art. Much of my creations are currently available at Indigo Wings Gallery and Gifts at 4601 Monona Drive, Suite 102 and I try to get to the studio there at least one day a week to work.

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Ornaments made by Katlyn Pityer

 

This is the first in a series to introduce our artists. There are many more interesting individuals for you to get to know a little better.

#Indigo Wings, a little background . . .

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Twenty or so years ago as I watched my children and others struggle with a variety of obstacles, some created by society and others that were heaped upon them by the circumstances of their birth, I dreamed of a way to promote their exceptional qualities without making them seem like “the handicapped”. I continue to be shocked when I hear those two words, still too often used in the 21st century. People have disabilities and abilities, there isn’t always balance; some days are a lot rougher than others; but the abilities are always there; and yes, some people do need more help finding and nurturing them; and that’s okay. That is why I went all in to start a nonprofit Studio and Gallery to nurture those abilities and showcase their talents.

Indigo Wings continues to pursue the goal of building a community of artists who have space in our studio to work and then sell their creations in our Gallery and through other outlets that we continue to pursue on their behalf. Our artists are talented individuals who happen to have disabilities. As a nonprofit we depend upon the commission from the sale of these creations (no government subsidies here) and the generosity of donors to continue to provide space and to showcase this talent. We also encourage artists to gather with their peers who share their common interests, learn from each other and share life experiences.

We have been busy since our soft opening in late August. New Artists have joined our Studio; we have been involved in a number of exposure events including, IgniteMadison for Social Good, check it out at http://ignitemadison.org/; Mad City Bazaar @ Top of State, a very windy exposure event, cut short by weather; MadisonNonprofitDay Conference ,because of which  we have been invited to sell at American Family Insurance Nonprofit Vendor Holiday Sale on 11/17; and we are exhibiting our artists work at the new offices of Employment Resources Inc.  located on International Lane in Madison, on their beautiful Gallery Walls.

The time has come for a Grand Opening Celebration. We appreciate all the support and generosity of everyone who helped make this dream a reality.  Please share this invitation with anyone you think would be interested grandopeninginvitation.

Please RSVP to indigowingsinc@gmail.com.

Check out our website; www.indigowingsinc.com and Like us on Facebook (Indigo Wings Inc).

There will be more information on the Artists and upcoming classes in future posts, so stay tuned.

#Dancing in the Rain

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We all have a personal definition of success; power?, money?, love?, peace?, it doesn’t matter what it looks like as long as it makes you happy. Suffice it to say my personal goals are of a more manageable proportion. In fact, I’m not so sure that most of the great things that have happened in my life ever were “goals”.

“Stuff” happened in my life that was not so much ‘planned’, more along the lines of fallen into. Becoming a cheerleader in highschool happened because a friend needed someone to try out with; getting elected Vice President of my residence hall in college happened because a friend needed a running mate, who knew they would split the ticket; living overseas happened without my help, travel in southeast asia the same; finding the love of my life happened when I opened a door not expecting to find love; and children happened because we decided to give Foster Parenting a “try”. None of these had been goals of mine, I guess I have just been incredibly lucky.

Perhaps the only goal that I have ever had was to start Indigo Wings Incorporated, www.indigowingsinc.com, a Gallery and Studio where people with disabilities can come together, create and sell beautiful works of art. I’m not sure when the idea began to form, except that it was during the time when our Foster kids needed services that were not available to them.

When a pregnant woman drinks, the alcohol stays in the amniotic fluid for roughly seven days, that means, if you have a drink once a week, your fetus is swimming in booze or drugs or whatever you consume, all the time! The results can vary greatly, the baby can have relatively minor complications or severe cognitive impairments.  Brains develop early in pregnancy, so you can imagine how many children are affected by the drinking their parents did without knowing they were pickling their baby’s brain. Sometimes it’s expressed as being really bad at math, or anxiety, or mental health issues as they struggle through puberty and continue to haunt them in adulthood.

Six of our foster children were available for adoption, again six kids was never a goal, yet we adopted them all. We really had no choice, by the time a decision was made that they could not return to the people who had given them life, we couldn’t say no.

All of their birth mothers were “poly-drug-users”, each was affected differently so we continued to support them in any way we could think of. We traveled with them, went on so many camping adventures, they tried soccer, gymnastics, dance, scouts, and hobbies. Creativity was the one unifying factor, expressed in different ways so that it was more supportive than competitive. We had a huge play room, most of the basement, plenty of dress up clothes and puppets, as well as entire cities made out of large cardboard cartons, an indoor slide and more. Yes, there was plenty of dancing in the rain.

My life has been far less about planning than living. There have been so many beautiful memories and adventures. Luckily I have had an incredible cast of family and friends without whom none of this would have happened.

Our children are now adults and most of them are sharing Indigo Wings with me. They love me enough to try to make my dream come true and for that I am truly grateful.

Turning 60 and Indigo Wings

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When I turned 60 I was in denial, I suspect not unlike most people. I was happy to say that I didn’t feel any different, after all it’s just a number. You know what happened next, stuff started to hit the fan as though this milestone really was serious. We’ve all been there, thinking that enough bad stuff had happened to fill the bucket, how could there be more? Most of us know there is always the potential for more. Like Gilda Radner said . . . “It’s always something”.

It took a couple of years before I realized that I had better figure out what I wanted to be when I ever grew up. For many years there had been this fantasy of starting a nonprofit. One where people with all sorts of disabilities could come together to create beautiful things and build community. Sometimes I even dared to speak of it to others and was encouraged by the response. Doing the research was not difficult, figuring out what I needed in terms of paperwork, what to file; where and in what order. There was no shortage of things to do, the distractions of family, friends, work, and the years flew by. We were busy as Foster Parents and Adoptive Parents feeling secure in the statements from professionals that our kids would “grow out” of the troubling mixed bag of issues they struggled with. I took classes on Fetal Alcohol Spectrum Disorders and babies born to mothers addicted to other drugs and believed their words of encouragement. I raised six of those ‘science experiments’, followed the rules about caring for and raising them, exposing them to travel, camping, soccer, gymnastics, dance, lots of people with different kinds of disabilities, and about caring for others. They are, for the most part, truly wonderful adults with vastly different personalities (so much for nurture over nature) who have ingrained in them a basic concept of fairness. They are caring and socially responsible adults. What more could I ask for? I’m their mother . . . the moon. What I would settle for is more financial and vocational stability and fewer bad days. The issues they struggled with as children still haunt them today. The experts were wrong, when you pickle a babies brain in a brew of alcohol and drugs, there will be lasting consequences, they don’t just grow out of it!

So . . . after the third funeral in as many months I decided I had better get moving before the fantasy died with me. I dug out my research and started to file paperwork with the state and then the feds. March 1, 2015 was the birthday of Indigo Wings Incorporated, a 501(c)(3) organization that has a Studio where people can work, take classes, find mentors and make friends. There is also a Gallery and Gift Shop where individuals with disabilities can sell their creations.

The dream/fantasy has taken on some very real structure and I am equal parts scared and excited. We are finding new artists and of course, some of the talent comes from my own adult children. It’s not that anyone should be scared of turning 60, on the contrary, use these milestones and stop settling for dreaming and start doing.

http://www.indigowingsinc.com

Aging Caregiver

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When I first met my husband, I thought he was incredibly handsome, he had sparkling blue eyes and an incredibly warm smile. Okay, so he happened to be piloting an electric wheelchair, big deal. As things progressed, we made adjustments, dating, camping, other stuff, it was no big deal.

When we thought about moving in together I did some soul searching about the future and what that might mean, we both figured we’d just take things as they came up, the old one day at a time scenario.

This philosophy has served us well, we bought a house, set about making it accessible, got married, danced together at our wedding, tried to have a biological family, found out I had health issues, became Foster Parents (dove into that head first), all our fears about parenting and managing vanished, as he took to fatherhood like the wheelchair was just another piece of equipment that was part of having children. He even learned to drive and got the first van he could drive with a joystick. There were many adaptations along the way and I was always happy with our choices.

This is not a fairy tale, although I believe ‘happily ever after’ is still possible, after all we have weathered our share of issues.  The deaths are the hardest; parents, siblings, a former foster son to a heroine overdose, close friends. There were the surgeries including; back, two, mine; cancer, more than once, his; enough emergency room visits to fill a book between him, the kids, and me; persistent wounds, mostly as a result of the radiation treatments and aging; many infections, PICC lines, wound vacs, more surgeries; enough already!

We have been lucky, adopting six of our twenty foster kids, having the most wonderful grand daughter, surviving and thriving! All the stuff that makes life worthwhile.

There is the other side of surviving, aging. Which brings me to the caregiver issues. Living life takes it’s toll and I worry what will happen as I lose the ability to do the things he needs. There have been many outsiders hired as attendants over the years, most of those experiences did not end well. Either they left for better paying jobs, or worse, injured him (like the broken arm because the guy lied about his knowledge of range of motion exercise).

We are still adapting, learning new ways to do things. I worry that it will not be enough. The two most important things to me, my hands, which have ‘significant’ arthritis and my sight, I have a hereditary form of macular degeneration, two macular holes (repaired), cataracts (repaired) and diabetes, slowly taking it’s toll. Some of this was exacerbated by the overuse issues of being the hands, shoulders, back and legs for both of us, but there is a large dose of heredity involved as well.

Ironically, people often asked me if I was sure about marrying him, turns out they should have been asking him. All the stuff we talked about was about him, we never thought I would become the bigger issue. In case you missed the message here; The heart wants what the heart wants! You can’t plan for everything, shit happens. Roll with it as we always have and will continue to do.

ADA Legacy Bus Tour

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The ADA Legacy Bus Tour will be in Wisconsin June 24-27, 2015 to help kick off the final month of celebrations before the big 25th Anniversary in July of 2015. The bus tour is highlighting the progress made since the passage of the legislation and the signing ceremony on the White House lawn in 1990, there will be educational displays showing how much progress has been made and what still remains to be done.

Wisconsin is failing miserably in many of the areas that the ADA was supposed to “fix”. Unemployment is high, 80% of people with disabilities want to work but only 18.7% actually have jobs. Accessible housing stock in this state is at a dangerously low level. That means that if you want to buy a home or rent an apartment that is “visitable”, i.e., level entrance, wide doors and halls, etc., so that friends with mobility issues can come over and hang out, good luck. While there has been progress made in deinstitutionalization, the community supports that are absolutely essential have not kept pace. Low income housing has huge waiting lists, or the waiting lists are so long that they are closed to new applicants. Really hard to pull yourself up by the bootstraps when there are no boots, strapless or otherwise available to you.

Fifty years ago your rehabilitation from a traumatic injury could be six months, more if necessary. With today’s insurance formularies you’re lucky if you can get thirty days. Your life is turned upside down and you need to get your shit together, find an accessible place to live, transportation, money, etc., etc. in one month. This time line is not based on improvements in rehabilitation, although there have been many, it is based solely on insurance company profits. Mostly it’s a struggle to get some semblance of your old life back. There is more to it than the struggle and strife, so much more.

People who make it past rehab can have whatever they want in life. Finish school, become advocates, work, hang out with friends, grab a beer, start an Independent Living Center with others in need, date, advocate some more, buy a home, and then another in a different city (because of a career change), marry, have children, or do foster care and adopt them, learn to drive (when the technology catches up with the need), become the “soccer dad” who schleps kids to practice and games, or whatever the kids need/want. You could figure out how to hook a bike cart behind your power wheelchair so you can take the little ones for a walk around the neighborhood after dinner, then fall asleep telling them stories at bedtime. So much more, but you have to keep your dream, whatever it is alive.

Bad things can happen too; foster care has it’s challenges, there were a fair share of accidents and illnesses, and sadly many deaths, many surgeries including cancer and the chemo/radiation that followed, which caused it’s own set of challenges. The point is, that the life of someone with a disability is much like any other life. No free lunch, no handouts from ‘the government’, people with disabilities want what everyone else wants; the OPPORTUNITY to live the life they choose. Pretty simple, or at least it should be. Hence the importance of legislation like the American’s with Disabilities Act, because too many people put profit above common decency.

Trans update

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December was busy, my son was here for a visit. His testosterone injections are going well, better than most, his body had stopped producing estrogen which alleviated many of the difficulties. More than a quarter of a century it waited for him to make the decision. The right one.

This person that I had raised for twenty eight years and six months, through all the traumas of youth, way too many brutal encounters with police, entering adulthood, not without more trauma, was transformed. The psychiatric evaluations, special education dramas, the medications, and the two inpatient psychiatric stays (worst moments of my life and his too), it all lead up to someone who is off Carbatrol and other medications we were told he would need forever.

Five weeks can rush by so fast, we repaired a fence together as well as many other adventures. It feels good to have a son, fundamentally he is the same person he always was, except happier and at peace with himself. I don’t understand a parent not supporting their trans son or daughter, it’s harder for me to understand the kid’s who smoke (not in my house) or drink to excess. Those are choices you can make freely, being stuck in the wrong body is not a choice, it’s a mistake that you should be free to correct. Don’t tell me God doesn’t make mistakes, I’ve seen far too many examples of those (many of them in politics).

We’ve all had encounters with trans people, whether we were aware of it is another thing. I sought information from a couple of people, explaining my fears and anxiety for my son, and they were happy to help. Their insights have helped me greatly, but they did not influence my acceptance. That was a given, your child is your child, whether by birth or adoption and however they choose to live their life, as long as they do no harm, I’m good.

#ADA@25

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The Americans with Disabilities Act (ADA) did not come easily. People from every state, with and without disabilities worked together to ensure passage. The ADA came out of repression, partly due to the 88th Congress’ purposely excluding people with disabilities from the Civil Rights Act in 1964. Thousands of individual citizens where institutionalized, all of their rights stripped away, because it was cheaper than treating them as citizens with rights. Our education has exposed us to Nazi atrocities, and much more, including our own Japanese internment camps, but very few textbooks detail the systematic “treatments”, experiments and torture carried out in this country on our fellow citizens.

There are still people who have not benefited as much from the ADA and their rights are in further jeopardy, people with multiple disabilities, serious mental health issues, homeless people including Veterans. They rarely receive services, are not considered employable and by many seem as a menace. We’re talking about human beings for whom support does not exist. Police departments in many parts of the country shoot first instead of helping. If you are hearing impaired and can’t “hear” the “warnings” from officers that they are allowed to shout before they can legally kill you, too bad. Police officers have a right to defend themselves, but they also have a responsibility to “protect and serve”. Some of these departments are asking to be exempted from the provisions of the ADA so that they don’t have to bother with the rights of these individuals.

I am saddened that there are still so many people so ravaged by Mental Illness, PTSD, Autism, Cerebral Palsy and more who are not afforded the most basic of civil rights. Every city in America has a homeless “problem”, overwhelmingly, homeless people have some sort of disability. I am also sick of people who think they should just ‘pull themselves up by the boot straps’ and ‘stop being so lazy’. Walk a mile in their shoes before you offer that kind of lip service. (Sorry, too many cliches, blame it on SAD)

Many of the people who were instrumental in the passage of the ADA are no longer with us to share in this milestone. Justin Dart, who’s efforts to talk to people in all 50 states, face to face, at his own expense led to the completion of the legislation and assured that it would not be watered down in the many revisions and amendments. There were others who came before Justin that blazed trails. Ed Roberts, “the father of the independent living movement” who fought for inclusion at U.C. Berkeley, and then founded the first Independent Living Center. These were amazing, extremely likable, funny men whom I had the extreme pleasure to know. If you Google either of these men you will find their stories. Sadly the majority of those involved in disability civil rights over the decades are not ‘searchable’, that is why the ADA Legacy Project is so important. If you have stories to contribute, contact the group where you are and tell your story. The Wisconsin ADA Legacy Project can be contacted at http://www.physdisco.com, we need your stories as part of an ongoing effort to preserve our history. Physical Disability Community Wisconsin, on Facebook works and here too, of course.

Let the celebrations begin! The ADA Freedom bus tour is crisscrossing the country leading up to the national Celebration in Washington D. C. on July 26. Many aspects of the ADA have helped people without disabilities, curb cuts, ramps and automatic doors are especially appreciated by parents with strollers and/or little ones in tow, aging adults, as well as delivery persons. Large print versions of newspapers and magazines as well as websites, menus and much more, assist those of us with failing sight. Probably most importantly because those “cures” we were promised in the last 25 or more years just haven’t panned out.

Do yourself a favor search http://www.adalegacy.com for information and links to get involved in your area.

Macular Hole, @ 10 months

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Symptoms of the first Macular Hole were quite gradual and I ignored them for months. I thought I could attribute them to; stress, eye strain, fatigue, etc. but, I was wrong and should have been more careful. When your vision starts to go is not a good time to bury your head in the sand! When I was diagnosed many months after the first symptoms, the hole was large and the full thickness of my retina. The surgery did not exactly go smoothly, but again I should have been more proactive. I did what I was instructed after the surgery, kept my head down, did all the drops, etc.

The last ten month have been a boring waiting game, waiting to see how much vision returned. Boring, if you count the inevitable cataracts that formed as a result of the first surgery, so another surgery (a breeze) to implant an artificial lens. How could I forget the second macular hole, no time for gradual symptoms, I fell outside in the yard and it tore, this time I knew right away. That surgery came a month before the cataract surgery and was a breeze compared to the first (me being proactive and speaking up about what went wrong the first time). I have no “good” eye left and it is time to get used to that. No matter how good your surgeon is, healing well is much like getting the macular hole in the first place. . . Shit happens, and in this instance, twice.

Life goes on. I am not a patient person but I will adapt as I have through all the shit thrown my way in life. Take the good with the bad and make the best of it, that is all any of us can hope to do. Our only limitations are the ones we place upon ourselves. I’m neither wealthy no particularly talented but that never stopped me. There has been improvement in these ten months but when I really try to see things, like a word, the middle wiggles. Big deal, with the help of friends I have managed to make my computer print large enough so that I can see, I have traded books for e-books, own a really big cell phone and I am the proud owner of a number of magnifiers. Yes, if I glance quickly and repeatedly at 3:00 and back, I get a glimpse of what I am trying to see in my peripheral vision (this is unbelievably tedious not to mention the root of many headaches). I had been hoping for a complete recovery.

I have so much else to be grateful for, the love of a good man, family and friends who are there to assist when needed. I am at peace with this . . . until someone tries to take my drivers license from me!

Transgender Issues

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Yesterday was a pretty big day in terms of where we, as a nation, are headed. Marriage equality has been gaining momentum across this country and people seem like they may be gaining a measure of common sense. However, the Transgender portion of the LGBT community has always lagged behind in terms of acceptance. What does it say about us if pretending to be Gay is easier/safer than admitting that you are transgender? A Day of Remembrance is a good way to start some more conversations.

There are some pretty compelling reasons not to come out; the homicide rate is disproportionately high among trans people as is the rate of bullying. The suicide rate is fifty-one percent compared to 4.6% of the for the rest of the population, 51%! You have to be really brave to stand up to the rest of the world and proclaim that you know there is a fundamental difference between the way society wants you to behave and what you know with your entire being is the way you must live.

There was not a specific day that I can point to when my daughter and I had the conversation, because there were many conversations over many years. As she grew up and tried to fit in, as much as that is possible for someone who was finally given a useful diagnosis at the age of 13, albeit a decade late, on the Autism Spectrum, specifically Aspergers, there were many signs. More like a son on many occasions; chopping wood, climbing trees, requests for a chain saw, etc. and an early interest in girls, it was obvious there were things to be worked out.

Parents worry about how much the decision to come out will hurt their ‘child’, in some corner of our minds they will always be our children, that is the down side. This does not outweigh the freedom of living the life that you know you were meant to live as the upside. The hardest part about being the parent of a trans person is keeping the memories and the words, straight (pun intended). When I think back to when she did something particularly memorable, when she is now he, I get tongue tied. Sadly, at my age this is bound to happen often, ask any of my kids, I can’t keep their names straight either.

There have been a great number of losses in my life so I know one thing for sure, life is short! Everyone deserves their own version of happiness and why should someone else be able to tell them what that is supposed to look like. I don’t care if you are about to Transition, have already done so, or just beginning to explore the issue, find people who support your decision, they are out there, and get the support you need. Of course, as a mom I have to warn you to be careful, there are a lot of haters out there too. Take care of yourself and find people who love you no matter what.

The good news, I now have a son and while my brain will continue to struggle to get the name and gender correct, he knows that I love him and that’s what counts.