Posted on Friday, December 7th, 2012
What do you all think about this? It strikes me as a pretty negative assessment? Do you think this type of interpretation is helpful? What would be a better way to frame the sibling experience?
Read it here…
Read a great analysis here – http://accordingtodude.wordpress.com/
These types of articles always upset me. I get that the experiences presented are true for some people, but they’re so far from my own experience that I can’t relate. I’m four years older than my brother with autism, and certainly I was aware that he was different than other kids, but didn’t “get” that I should have been bothered by that. He was cool. He is still cool. We’d play for hours with blocks, or watching ants, or “making clay,” or hiking through the woods and so on. Maybe my mother was just better at presenting to us why he did some things the way he did, so we were able to just shrug and say, “yeah, that’s Eric.”
Should we pretend that so-called normal brothers and sisters don’t ever bother us or are never experienced as “weird” or “embarrassing” or hurtful? I can’t think of a way my experience with my brother was worse than my experiences with the two sisters I was raised with, or even different, except that, actually, we got along better since we liked similar activities.
I thought the article was refreshing in its honesty. I think too often that we sugar coat the reality of living with a sibling with a disability and the toll it takes on the sibling. I felt that the article expressed that the bonds of the siblings were still very strong, but that there are negative feelings that brew from situations like this and it is the truth in many instances. There is guilt at wanting a “normal” sibling and there is stress at feeling as if that sibling is your responsibility, but there is also a deep sense of love and devotion involved. All of these emotions mixed together is not always the healthiest combination and it should be addressed and brought to the forefront. These siblings are our next generation of caregivers and if these emotions and feelings are not brought up and resolved sooner, then we will have a future generation of caregivers who are burnt out before they even start.
Lou Ella Price’s short but to the point, is well written. i am a 54 yo brother to a downs brother (52) caregiver… tough – your life revols around the sibling. where do you truly find support… families are smaller… agencies are cutting back shamefully….
What is it that takes a toll, though? There are a lot of problems that would not happen if people were supported. I wonder if the “disability as a tragedy” narrative takes the focus away from things we can do to help.
Dr jean safer is must reading about siblings. See her book “the normal one”. There are factors that shape differences in experiences. Where along the spectrum a person is; parental approaches to all of the children. My sister was not diagnosed until her late fifties and that was because I needed to find out why she was struggling all her life. I evolved into a caretaker after our parents died I spent YEARS struggling with ambivalence towards my sister. We now have a good relationship but there was no context to understand what was happening in our childhood. The article is a fair one. I do not think there is any need to reframe it or try to make it somehow a more positive one. These are realities the autism community needs to address as they are. Dr safer is refreshing because she does not sugarcoat the sibling experiences. You then can decide for yourself if it resonates or not. But at least this reality is visible for those of us who have had these struggles.
@ Carolyn- I think it is fair to ask for an authentic portrayal of sibling relationships. What was it that helped you to a “good” relationship now? That is the story we need to learn from, because a lot of siblings do feel ambivalence, disability-related or not, to their brothers and sisters. I think sometimes we look at disability as the root cause of the ambivalence when it isn’t necessarily. In my mind, a worthy goal is not to make all siblings like each other, but to give them the tools that they need to get what they want. We also tend not to think about people with disabilities’ perspectives, either. They may not want us involved or they may feel ambivalence toward us- I would feel that Safer would more authentically represent sibling experiences if she included someone who identifies as having a disability voicing similar feelings. I bet they have them.
I honestly think the article is going to affect people according to their own experience. I do have a brother with at the deep end of the autism spectrum and I left my own American dream to come back to Spain to at least give him a better quality of life. Yes, I’m happy I’m doing that, but on the other aspects of my life I’m completely miserable. Like some of the people interviewed in the article I feel a certain jealousy for those who have what’s called “normal” families, why me? And all that hits me on a daily basis. And although I do respect and admire those siblings who feel so lucky and so blessed to have an autistic brother or sister, there are many times during my day that I wish I had that magic wand that made my brother “normal.”
The Sibling Leadership Network