This is the third in a series of posts about siblings/disability. That is, siblings of people with disabilities and people with disabilities and their siblings.The first post was my story. The second was an interview that Patti Rice did with her children.
For this post, I am delighted to have my dear friend Melissa Stoltz of Garden of My Heart. Melissa and I have a lot in common: the Baha’i Faith, a passion for disability advocacy and policy, and our daughters could easily pass for identical twins. Oh, and we are both Star Trek fans.
She is writing today of her experience in essentially choosing her brother-in-law. A beautiful post and one that I am sure you will enjoy.
Thank you Melissa. For being my friend and for sharing your experience here.
My first introduction to a person with a developmental disability was the day I met my brother-in-law, Hans. I’m sure I knew people with disabilities before this and simply didn’t realize it, or remember it, but Hans was my first formal introduction to the world of developmental disability.
My husband and I met in college and we had dated for a while before I had a chance to meet Hans. My husband only ever mentioned that he had a brother and never said anything about his diagnosis – he just told me a lot of stories about growing up with him, just like any brother. Today I know that my husband was the perfect model for me for talking about people with disabilities.
When I was about to meet Hans for the first time, my husband said simply that he has a cognitive disability and moved on to other things he thought I should know about his family.
At first, I was very nervous around Hans. I didn’t want to do or say the wrong thing and I was terrified that he wouldn’t understand me. That’s hard to admit, but it’s true, and I think it’s partly why I understand when people react in a less-than-positive way to people with developmental disabilities. We are afraid of what we don’t know.
So I carried on and tried to understand this man who would someday be my brother-in-law. He has an amazing memory for detail and will happily describe favorite places, people, and events. He is also an amateur photographer with an eye for unique subjects. I’ll never forget looking through one of his albums for the first time, admiring his view on places I had been before – but seeing things I had never noticed while I was there. He is very habitual, which is something to which I definitely relate, and he craves routine. He is a genuine, kind individual.
When things got serious between hubby and I and we started to talk about marriage, Hans definitely lingered in the back of my mind. Was I capable of caring for an adult with a developmental disability? Was I ready to possibly limit some life choices in the future?
Today, I’m a little embarrassed to admit any of that even crossed my mind before I married hubby. Looking at my own child with a disability, the answer is now a resounding “of course” followed with a “silly Melissa.” But back then, before I really understood, I had to think about it.
And for that reason, I feel like I chose Hans. I actively decided to make him part of my life and part of my future. I didn’t choose a “burden,” I didn’t make a “sacrifice,” I just took a long hard look at Hans and said “Yeah, I want him in my life, too.”
In the Down syndrome community, we hear a lot of concerns about our kids being a burden to their siblings. I can see where people are coming from on this – but only because I know they don’t understand or see the possibilities yet.
Hans is not a burden. He is family. Taking care of your own is what families do, regardless of ability and diagnosis.
I think my in-laws are, in some ways, a good example of how things could be for people with developmental disabilities.
They had Hans, and then moved on with life, with living. They went on the same trips they would have taken otherwise, worked the same jobs, had the same hobbies, raised the same family. My husband was not denied opportunities because of Hans, nor was Hans denied opportunities because of his siblings. They struck the best balance they could.
They also worked very hard to find natural supports for Hans – people who are part of his life, but not paid by the state to be there. His landlord checks in on him, the people at church and the grocery store know him. People outside his family care for him and they support him.
He is not a burden. My husband and I welcome the day Hans becomes a larger part of our lives. Yes, there will be some adjustments, but it will not be a burden.
|Hans and Baby Rowenna|
And as an outsider who joined this family, I am proud to call Hans my brother. I do not fear our future.