Sibling Stories

Send Us Your Sibling Stories!

sibs day pic

We all have stories to tell – it’s part of our DNA, passed down from the beginning of humankind.  Stories have been called “the connective tissue of the human race.” At the Sibling Leadership Network (SLN), we think about stories and the role they play in our lives a lot.

By telling us your story, you can help bring us closer together as a network and promote SLN core values and mission.

To mark the occasion of National Siblings Day, the SLN wants to collect your stories to promote the SLN core values:

  • Individuals with disabilities have the same rights as all members of society to dignity, respect and the opportunity to grow and to be productive members of their communities.
  • Siblings of individuals with disabilities can have a powerful, positive impact on their siblings’ experiences, and are uniquely positioned to help ensure their present and future care in partnership with service organizations and government.
  • In promoting the rights of our brothers and sisters, and of all individuals with disabilities, we are committed to advocating for policies and services that meet their needs.
  • Siblings can be of great support to one another to enhance both our lives and the lives of our siblings.

How do your stories reflect the values above?  Your story can help solidify the work of the SLN because your stories have the power to build understanding. They may also have the ability to make you jump for joy! The key to story-telling is knowing that values inspire action through human emotion.

Thank you for joining in this SLN Core Value storytelling initiative for National Siblings Day!  Your story has power to inspire, to energize, and to mobilize.

Please send your SLN Core Values story to lex.bolyanatz@siblingleadership.org. Please send a photo of you and your sibling(s) if you are willing. We will follow up seeking rights to share and publish.  Thank you!

 Our Stories Have Power!

The Sibling Leadership Network believes that stories have the power to connect us and build the sibling movement. To mark the occasion of National Siblings Day, the SLN wants to collect your stories to promote the SLN core values:

  • Individuals with disabilities have the same rights as all members of society to dignity, respect and the opportunity to grow and to be productive members of their communities.
  • Siblings of individuals with disabilities can have a powerful, positive impact on their siblings’ experiences
  • , and are uniquely positioned to help ensure their present and future care in partnership with service organizations and government.
  • In promoting the rights of our brothers and sisters, and of all individuals with disabilities, we are committed to advocating for policies and services that meet their needs.
  • Siblings can be of great support to one another to enhance both our lives and the lives of our siblings.

*****

From Meghan Burke, SLN Research Committee Co-Chair and Assistant Professor of Special Education at University of Illinois, Urbana-Champaign:

meghan and ryan cropped 

Ryan is my 20 year old brother. He loves broadway plays, movies, television shows, and bowling. Most weekends, we go out to eat at restaurants, get frozen yogurt, and watch movies at my apartment. Ryan also has Down syndrome. Most people focus on what I provide Ryan; however, he has given me so much more. When I got married, it was important that Ryan was a big part of of the wedding. He played the wedding march as I walked down the aisle. He also served as the best man to my husband. Finally, Ryan gave the last toast at the wedding reception. Most of all, though, Ryan was the life of the party! This picture shows a piece of our sibling story.

*****

A Self-Advocate’s Perspective

The SLN asked Liz Weintraub, a self-advocate who works for the Association of University Centers on Disability (AUCD), about her experience with her siblings, and why siblings matter.

 SLN: Tell us a bit about your family.

Liz: I have three sisters, and I am close to all of them. One of them lives close by, and I actually just got off the phone with her. She calls from time to time just to say hello. Our mother passed away last year and now my sister calls even more, I think to help fill that loss a little bit.

SLN: How would you describe your relationship with your sisters?

Liz: All my sisters have their own kids and own lives. When we do talk, it’s like, we talk and say hello, but they don’t get in my business, and I don’t get in theirs. I actually interviewed one of my sisters for The Riot! Sibling issue. [Check the column out on Page 9!] Ultimately I know my sisters are there for me if I need them.

I used to try to get one of my sister’s attention a lot. Other people told me that it was okay but my sister didn’t like that I was getting upset when I would try to get her attention. One day I was getting upset and she left an event early. It made an impact and made me realize that I needed to try to change so that my sister and I could still be friends. We as self-advocates need to realize that, if we want to be friends with our siblings, we need to be respectful of their time.

SLN: Why do you think sibs are important?

Liz: Sibs are so valuable. My sisters have helped me more than a provider, because they know me best. Siblings are friends who you can trust, someone who isn’t paid.

liz and sibsSLN: What else should sibs know?

Liz: Even though we are disabled, people think that we need a lot from our sibs, but my sisters have their own lives, their own children to take care of, and I know they are there for me and would help me if I needed them, but I can’t run to them every 5 minutes. I’ve learned a lot about how to be respectful of others’ time.

Also, my sisters would advocate for me if I needed them to, but they don’t want to advocate in Congress. And that’s okay. I think you need to let siblings be who they are. It’s great that a lot of sibs within the SLN are really strong advocates, but it’s not for everyone. And that’s okay. However, I know my sibs would advocate for me if I needed or wanted them to.

 *****

MASTER WOODY

by Ann Talman

My parents faced heartbreaking decisions in the early 1950s when choosing what was best for their little boy Woody, born with severe cerebral palsy in 1948. Woody was diagnosed at age two as a non-verbal, spastic quad and his life expectancy was 12. His gifts are mental brilliance and a sweet disposition. At 8 years, fearing that as an only child he might one day be an orphan without a loving caregiver, he went on what our Dad, called The Campaign. Woody would touch mother’s tummy and Dad’s…lap, wave his hands and smile. It worked. A high risk at 38, Mother was ordered to complete bed-rest. On Friday the 13th, 1957, I was born by Ceasarean section. On the Polaroid taken at the hospital, Mother wrote WOODY’S ORDER! My instant nickname. The family legend was that Woody had conjured me. That I had a destiny: “to be thy brother’s keeper in case anything ever happens to mom or dad.”

I was named Ann because it was a short word beginning with an open vowel and ending in a consonant in case Woody might one day be able to speak. From earliest memory I embraced my destiny and adore my brother.  We became a fearsome team for life. Woody was my very own real life doll to care for and he needed me. I remember the day I was finally allowed to learn to help feed him. I was five. Growing up my world revolved around Woody being home with us from what I called his “sleep-away school.”  In those years (the early 60s) he came home a month each July and two weeks at Christmas. My Advent Calendar was not just to count the days to Christmas. It was to count the days to Woody!

In 1952 Dad was transferred by USSteel from Birmingham, Alabama to a mining town in West Virginia. There were no special schools or resources for a child like Woody. Inclusion was not even a concept. The Cerebral Palsy Center and United Cerebral Palsy was renowned in Birmingham and Woody went to day school there but lived at home. Mother’s family was there too. So they chose to have Woody transfer to the long term nursing home section of the school. They made a pact to never let more than 6 weeks go by without visiting him. Mother’s mother, her sister Mary and the rest of her family filled the void for Woody and were his loving support system.

One more promotion took dad to Pittsburgh and up the ladder at USSteel. Our parents found a wonderful facility in Pennsylvania where Woody has lived since 1964.

Woody was wise to have conjured me because Mother died suddenly in a car crash in 1977 and soon after Dad was diagnosed with Alzheimer’s Disease. I became caregiver for Dad and Woody. Dad passed in 1995.

Going through the cedar chest to pack it for the movers when I sold the family home  I discovered Mother’s special letters  stored there.

The chest contained every letter, still in its envelope, that Dad wrote to Mother all the years he was fighting in World War II, 1942-1945. They were in bundles also with red ribbons tied around them. They were covered with censor stamps. She had re-typed edited versions of his letters with carbon paper and sent copies to the family. Even the carbons were preserved. Then I came across a blue Crane’s envelope with “Master Woody Talman” written in Dad’s handwriting.

Having never seen it, I was drawn to this letter and sat down cross-legged on the floor to read it. My father wrote it to be read to Woody by Mother as she took him on the train to his sleep-away school (nursing home) for the very first time in 1952. Woody was four years old. I believe I was meant to find it and it has repeatedly inspired me when I feel discouraged.

Master Woody Talman, Monday, September 1, 1952

Dearest Woody,

     If you are a little young for this letter, perhaps Mommy will read it to you now, and save it for a later time.

     Everything up to now seems as a rehearsal for the act that must be played by the three of us for the years to come.

     The hardest parts are to be played by you and Mommy. I shall not try to explain why mommy’s part is harder than mine, she understands that well.

     You must find the will and the courage to learn to do those things which are not natural to you. As part of that, doing what your doctors and teachers want you to do is of course a first requirement.

     Most of us use only a fraction of the capacities we have. It seems to me you must try hard to offset the fact that some of the capacities are not easily available to you.

     It certainly is true that all men of equal capacities do not accomplish similar results or achieve the same goals. I am satisfied that determination, willpower, courage, and opportunity play major parts in their outcome. The first three you can have in full measure, perhaps even more than children to whom all physical functions come easily, they are up to you.

     The last one, opportunity, is the thing that Mommy and I can provide for you, because there are such people as Dr. Simpson and his associates at The Cerebral Palsy Center.

      Making the opportunity available is not hard for us financially, but it is hard to have you gone so much of each year. Recognizing its utmost importance, and realizing that without the opportunity the others would be of little avail are all that makes it possible for us to let our little boy be away most of the time.

     While you are working on this long job you will have much need of patience, and good cheer. Your sweet smile and beautiful facial expressions make it pleasant for people to work with you. Your love of people makes it easy for them to know you and to respond in kind. Keep those traits, because they will be needed again and again during your life.

     Tonight I was very sad as I looked at the swimming pool where you had so much fun. Here at the house your books and toys in the dining and living rooms, your little dish in the kitchen and your room upstairs all looked as if you had just gone out for a short time.

     I drove to Welch, thinking of our rides together, and wondering if I could capture through my eyes the appeal that the lights, the people, the cars, and the buildings have for a little boy. I passed your favorite bus, but he did not blow his horn.

     Then later a thought occurred to me that is able to change the sadness to sweetness and the lonesomeness to good memories. Some of the happiest days of any boys’ and his parents’ lives are when he is away at school and comes home for Christmas and summer vacations. In our case that started about thirteen years sooner than most, but we will have a whole lot more of them than others. Your mommy and I want your vacations with us to be rich experiences that will stay with you throughout each year. Next summer we will make a baseball fan out of you, and take some weekend trips to beautiful parts of Virginia and West Virginia.

      While you are in school Mommy will visit you often enough that you will know we think of you always, and both of us will write post cards every week. You are making progress and we are proud of you.

 All my love to you and Mommy.                          Daddy (Woods)

I immediately called Woody and read the letter over the phone. He remembered when Mother first read it to him on that train. The sounds he made over the phone told me so.

“Woody, I have an idea. Every New Year’s Eve let’s have a ritual and read the letter for inspiration to keep on for the year ahead. OK?”

“Mmm. Ooo, ooo.”

Sometimes I can’t imagine what it would be like to be Woody even for a day, let alone a life. He is my hero. When Dad was in the final days of Alzheimer’s, Woody and I rented a house in Pittsburgh for 6 months and we lived together to help our father pass to the other side. Woody was my support system.

     At Dad’s funeral, three letters our father had composed at turning points in his life were read as his eulogy. Master Woody was one of them. I read the last, a portion of a letter our father wrote to his parents when he got his first big promotion from US Steel, still on the track to becoming President, right behind Mr. Stedman who eventually did.

Wednesday, March 31, 1954

          Dearest Mama and Dad,

          Effective April 1, Mr. Stedman becomes General superintendent of the Uniontown district, and I replace him at the Gary-Lynch district. Both of us are getting promotions at the same time. Of course I am very proud with great joy tempered by the fact that the vacancy was created by Art (Waldman’s) death. He was indeed a wonderful man, one to whom I shall forever be obligated.

There are many people who I must thank for this promotion and opportunity. The main ones are you two who sacrificed much to educate your children, and who taught us much that we needed to know. We seldom express ourselves, but it may be in order for me to tell you how proud I am of both of you, and how lucky I feel that your plans for a family included me.

Getting this letter has probably been shock enough to you, but I wanted you to have the news promptly. Looking forward to seeing you soon.  

I love you both, Woods.

When I finished, I looked over to Woody in the pews holding hands with Aunt Mary from Birmingham, and I said to the congregation:” My brother Woody and I would like to take this moment to thank our parents in heaven, and to express how grateful we feel that their plans for a family included us.”

This year Woody turned 65. He is beginning to decline physically but his spirit and our bond has never been stronger. I am ever grateful that he had the forsight to conjur me and even when it has been difficult, it has always been an honor to be Woody’s Order!

Ann and Brother