A Review: Crip Camp

By Rich Vogel

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What do you get when a bunch of kids with disabilities go away to camp, are free to be themselves, and form bonds and everlasting friendships? You just might get a group of kids who go on to change the world!

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That’s my takeaway from the inspirational Netflix documentary, Crip Camp. This film is rated “R” by the Motion Picture Association of America for “some language including sexual references.”

In 1971 a group of young people went to a camp for children with disabilities in upstate New York. Camp Jened was established in 1951 as a campground for people with disabilities - cerebral palsy, blind, deaf, epilepsy, and those stricken with polio, just to name a few. It was a place where kids could be kids, treated with kindness and humanity, unlike the real world where many were put in institutions and not allowed to go to school. As one person said, the problem is not with people living with disabilities, but people living without them – people who refuse to listen to those with disabilities or build a world that accommodates them, who turn a blind eye to their abuse, or limit their opportunities. 

The story is told through actual footage of that magical summer interspersed with current interviews with those kids from 50 years ago. We see bonds being made with lifelong friendships, meetings where every voice is heard, compassion, and even first crushes, all the things that go on at a typical camp. But this was the 1970’s. The war was going on in Vietnam, there were protests and there was a wind of change in the country. 

In 1973, President Nixon signed into law Section 504 of the Rehabilitation Act. Unfortunately, there were no regulations passed. No definition of what discrimination is for people with disabilities. 

When the Carter administration came into power still nothing was done. Joseph Califano, U.S. Secretary of Health, Education and Welfare, refused to sign meaningful regulations for Section 504 of the Rehabilitation Act of 1973. After an ultimatum and deadline, a group of activists with disabilities, led by camper Judy Heumann, staged a sit-in at the San Francisco Office of the U.S. Department of Health, Education and Welfare in order to get their voices heard.

The sit-in lasted 28 days, quite a feat for people in wheelchairs, many of whom needed assistance to eat and perform daily functions. In one scene, the Black Panthers are seen delivering food to the protesters. When asked why they were delivering food for free, they said because you are helping the community, trying to change the world. 

After mounting pressure around the country, Joseph Califano signed both Education of All Handicapped Children and Section 504 into law on April 28, 1977. It took another 11 years to get legislation introduced in Congress for the Americans with Disabilities Act and another 2 years before President Bush signed it into law in 1990 – nearly 20 years after that spark was lit for those young kids at Camp Jenard.

 This is an inspiring true story about friendship, perseverance, righting a wrong. Although the film is not about kids with bleeding disorders, it does highlight similar struggles. This is our story. The first residential summer camp, Bold Eagle Highlands, for persons with hemophilia was started in 1969 by Hemophilia Foundation of Michigan. 

Since then, many more camps have been created for kids with bleeding disorders and often their siblings. These camps promote independence by teaching self-infusion and leadership skills, guiding many to become camp counselors and advocates for the community, all while fostering camaraderie and lasting friendships with others in a secure and safe environment. 

These are just a few reasons why camp is so important for the bleeding disorder community. If you are contemplating sending your child to camp, watch this documentary. Your kid might just change the world.

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Camp: To Go or Not To Go... A Mother's Dilemma

By Terry Stone

My name is Terry.
My kid would love camp.
I don’t want to send him.
Kid is sad.
Don’t be like Terry.

Yes, I am (or was) one of THOSE parents. I feel like the decision to send my sweet little precious angel baby son with severe hemophilia to camp was like a meme.

Why should I send him? He’s perfectly happy here with me. There’s lots of stuff to do here. No one will take care of him like I do. What if he has a bleed or is lonely or scared. I braved and survived family camp with him when he was 7 thinking that’s all the camp he’ll ever need. He’ll be so happy we went as a family. He’ll agree with me and not want to go back over the summer by himself. I braved the camp mattresses, camp songs and camp food for him. Now I was sure he would be done with the idea of summer camp. After all, how could I live without him for a week?!

Well, I was wrong, so wrong! For one, those camp mattresses weren’t that bad. Singing around the flag pole brought back fond memories of my own girl scout camp experiences. And the camp food - it was great!

So why was I dragging my feet? Who needs to grow up here? Why didn’t I send my son to camp the first year he was old enough to go? I had no excuse other than it was time for me to grow up. Yes, my worries and insecurities got the better of me. My son was ready. He wanted to go.

Fast forward to 2019, Matt’s last year of camp. He has loved every minute of camp from day one when he was 9 years old. He has made lifelong friends and credits his yearly camp pilgrimage as relief from the mundane - enough to give him a true mental break from everyday life that he really needed. Camp helped him be who he is today; a confident, smart and empathetic young man who just finished high school a year early and is ready to create his future.

Camp is somewhat of a rite of passage. It’s where kids learn to socialize on their own, much different from the family reunion where you push your child forward as you say, “Honey, go hug your Aunt Joyce.” Sure, he loves his Aunt Joyce, but forced socializing is something kids NEVER forget. Don’t let that be their “remember when” story at the Thanksgiving dinner table. Trust me, you’ll regret it. Remember the meme, don’t be like Terry, send your kid to camp!

Every year my son came home from camp his voice sounded a little deeper, as he narrated tales of great adventures, recanted best songs sung around the flagpole that never made Billboard’s top 100, and told us about new friends, that through the magic of camp have become their own tribe. All are welcome, all are accepted. I watched my son blossom, each year a little wiser, a little more confident, and most importantly, very happy.

Child development professionals recognize camp as profoundly valuable to help children mature emotionally, socially, intellectually, morally and physically. In the bleeding disorder community, there are camps offered by regional chapters across the country and attendance is usually free.

As a parent, we are continually making decisions to care for our children. Camp checks many of the experiences children need in their overall development.

So, as the meme says… don’t be like Terry and delay an experience that will feed your child’s needs and soul, send them as soon as THEY are ready – they’ll let you know! Camp is magical and an experience that will profoundly nurture your child and the lessons and love will last a lifetime.

Say "I Do" To Camp! + The Land of Love

By Shelby Smoak

Perhaps nobody is more grateful for bleeding disorders camps than Christy Tignor. After a history of bruising and nose bleeds, she was initially diagnosed with Type 1 vWD at age 9 and thereafter began her lifelong love affair with camp, and one camper in particular.

Following her diagnosis, Christy’s hematologist connected her with the Kentucky Hemophilia Foundation, and to Land Between the Lakes Camp where at 10 years old, she attended for the first time. Land Between the Lakes was 4 hours from her home and had campers from Kentucky and Tennessee. Even though Christy admits she grew quite homesick that first year of camp, as the week wore on, fun took over so that by the end Christy was eager to go back the next year, and the next, and the next. And then there was David.

Since very few girls attended Christy’s camp in the 1980s, boys could be found a-plenty. And one particular boy from Tennessee, David, took a special interest in Christy by giving her piggyback rides when someone ran off with her shoes or trying to snap her picture. So smitten was David with Christy that, as he himself admits, he even dragged a hair dryer and hair spray to camp to style his hair to look good for her. That’s right: David’s essential survival camp list included a sleeping bag, pillow, toothpaste, snacks, hairdryer and hairspray. The girls were able to ditch the hair dryer and hairspray for the week, but not David!

The budding romance soon flourished at Land Between the Lakes. Each year Christy yearned for camp where her excitement to see David and hang out with him as much as she could, grew into a full-blown crush. Then, at 22, Christy confessed her crush to a mutual friend and her concern that David did not feel the same way. She felt he had grown distant and aloof, and perhaps failed to reciprocate her feelings. Luckily their friend was a born matchmaker and quickly told David of Christy’s crush, which spurred David into action. He called her. And their first conversation outside of camp topped at over 4 hours and concluded with plans for their first date. And it seems David really did have Christy at “Hello,” because she claims that after that first call she knew she was going to marry him.

The next year they got engaged and the year after they tied the knot! And where better to sow the seeds of matrimony than, well, at camp! The day after camp was over, they married at Brandon Spring Group Camp, the spot where, 14 years earlier they had met. Two years after marriage, Christy and David welcomed their daughter, Lily, into the world. After Lily’s birth, Christy found out that she actually has a platelet disorder rather than vWD.Their son Zachary soon followed.

“Even though I do not attend camp any longer, it still has a very special place in my heart,” Christy says. “Not only did I meet the love of my life there, but I also made lifelong friends.” Their daughter now carries on the tradition.

Each year, Lily looks forward to camp where she is a counselor alongside her father. And each year, the happy couple can only wonder what camp may give their daughter. Could a camp romance repeat itself? Is there something special in the water at Land Between the Lakes? Of course, Christy and David think so!

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David Tignor, or “Tigger“ as he is more fondly known, has been going to camp since 1981 when he was 6 years old. Today he is, well, an adult. Do the math. And his camp experience is extensive. He attended as a camper until age 17, when he transitioned to a junior counselor.

For the past 26 years, David has served at numerous camps in Tennessee and many other states as a counselor, Leader-in-Training Director and Activities Director, among other roles. David has brought his counselor experiences to hemophilia family camps in Maine, Montana, and Alaska as well as widely known camps like Tapawingo in Oregon and Hot-to-Clot in Pennsylvania. However, Tennessee’s Land Between the Lakes will always hold a special place in David’s heart because that is where he met Christy.

They met in 1985 when both were 10. Since there were very few girls at camp, David admits “they got a lot of attention from the fellas,” but luckily, he — armed with a hair dryer and hair spray, camp essentials in his mind —was able to woo young Christy. That the two could also swim helped as they were allowed into the pool’s deep end where David had exclusive conversation rights to Christy without interruption from other campers. Each year, they returned to their home states— David in Tennessee, Christy in Kentucky—their secret crush burned until summer returned.

In later years both serving as teen counselors and when in their early 20s, Christy was just about ready to give up since she felt Tigger was no longer interested in her. However, a mutual friend had the good sense to intervene. David made the call to set the situation straight and the rest is history; they dated, David proposed, they married at their beloved camp Land Between the Lakes, and soon their family grew. First came Lily, now 17 and a camp counselor having mild hemophilia herself, and Zachary, now 11; a loving son with special needs and a joy to all who know him.

For David camp is more than the educational and learning experiences. It moves beyond swimming, fishing, canoeing, archery, arts & crafts, or carnivals, tournaments, pool parties, and talent shows, or even Gold Rush, an event where campers find “fake” gold that they can spend at the general store and pizza parlor. The real gold for David is the ability to be around children and adults who also live with a bleeding disorder. “It opens doors to lifetime friendships,” David says, and “demonstrates that living with a bleeding disorder is just a normal part of our lives.”

Camp was extremely important to David as a child, but even as an adult, camp thrills him and he grows equally excited to go. “Camp Freedom opened doors to some very amazing experiences and learning opportunities,” he says. “To this day, I still get butterflies when I drive onto the camp ground at Brandon Spring Group Center at Land Between the Lakes where I get to see my second family every year!”