Share and Share Alike
EDITOR'S NOTE: A story in the April 4 New York Times points out the problems non-disabled sibling have when there's a disabled kid in the family. But there's another side to that story:
My children, Nell and Jake, share a great deal, like many young brothers and sisters do. They wear each other's jeans and sweatshirts. They like to watch Spongebob Squarepants together after school. They go trick-or-treating together, they go swimming together, they go to the playground together. At Costco, they sit in two-seater carts together, side-by-side. They both have pale hair and eyes, and a love of chocolate cake (mashed for Jake, extra icing for Nell).
Because they share so much, they also share in the benefits of access and inclusion. Sometimes this is a very obvious, concrete benefit: we can go more places as a family when accessibility is good. Our favorite playground, Aidan's Place near UCLA, is a great place for both kids, full of new and creative play equipment, forgiving surfaces, and a diverse clientele from across the city. There are sand basins at chair height for Jake, and swings that both children can use safely. Hospitals that have good child-life programs for pediatric patients tend to also meet the bedside siblings' needs--so Nell can give detailed reviews of the playrooms and video collections at three Los Angeles-area hospitals.
Sometimes, the shared benefit is more intangible, but no less real. Where Jake is included, where he's recognized and valued as a person, Nell gets a message too: your family is within the realm of the ordinary; your love is well-placed. When we are part of a diverse community of families, she has built-in peer support--no special meetings required, her everyday friends already "get it." When she sees characters using wheelchairs on Sesame Street, or watches the happy kids on Signing Time videos, she is reassured: this is what "normal" looks like, sometimes.
Just as both kids benefit from good access and inclusion, bad access hurts both kids. Nell, at six, is too young to understand a lot of the complicated ways that Jake is excluded, but she's certainly aware that Jake isn't allowed into the supervised playroom at IKEA (because diapers are forbidden). She wishes they attended school together (and more importantly, that they rode the bus together); she wishes it was easier to take him to her favorite beach. She'll speak up when Jake needs an advocate: at age three, she tugged a nurse's scrubs to explain, "Jake doesn't likes x-rays," and "Jake doesn't says words."
My son Jake was born with his rare chromosome disorder in 1995, two decades after the IDEA, and four years after the ADA was signed. He has benefited from the generations before him that fought for access, that demanded rights, that designed equipment and wrote storybooks with him in mind. Some of those fighters and writers were siblings, and I would love for them to know that, whether or not they intended it, their work is now reaching and shaping siblings in a new century, too. The justice they dreamed, Nell simply expects. The words they chose may well be the words she uses to express her love with honesty and pride.
Someday, we'll teach Nell about that legacy. Disability history can be her history, too. She should know that she shares a sibling's experience with Walt Whitman and Margaret Fuller, among others. But kids don't need famous names to learn. In fact, it's the seemingly routine stuff that has the biggest impact. Curb cuts in our street corners may be convenient for Nell's Barbie scooter, but they also bear daily witness to a commitment, carved in concrete, to be a community that includes her brother.
Anything that makes the world a more welcoming place for Jake, anything that embraces him as a person, as a citizen, as a child, makes life better for his sister, too. That's been our sibling experience.
Penny Richards is a research scholar affiliated with UCLA's Center for the Study of Women. She co-edits H-Disability and is on the blog team at Disability Studies, Temple U.
Since I am a IKEA fantatic and an IKEA is coming my way soon, I decided to call and complain about their no-diaper policy.
CORRECTION: No children wearing diapers are allowed in the ballroom, they can be dropped off and left at the play area.
IMO, this policy has merit as these areas are difficult to keep clean and should a child have a diaper leak the ballroom becomes unusable for all until it can be completely cleaned which may not be for some time. This is the same policy all public ballrooms I have seen have had.
Posted by: Susan Fitzmaurice | April 10, 2006 11:49 AM
Hello Penny, Nell and Jake!
Disability History has been my history as well..circa 1949 to present. For 47 of those years I shared it with my 2 years older brother John, who, due to my parent's involvement in the swell of parent advocacy, was about as "included" as one could be in our family and community. He's been gone now for 10 years, but I did the "sibling" thing and became professional in the helping profession....and in time my special area of focus became siblings. I am delighted at the opportunities that kids and young adults with disabilities now share with the rest of us..and at the benefits that gives to family quality of life..and to our society as a whole. We have a bit of a ways to go still, and I hope that all concerned, self-advocates, siblings, parents and others can keep joining together to "get it right". In the meanwhile, the continuing struggle can take its toll on the whole family And for siblings, as it is for their brothers and sisters with developmental disabliities..it is a lifelong issue that begins at a very early age...and becomes part of their "forever" lives.
Thank goodness for people like Don Meyer who continues to remind people that everyone in the family is affected to some degree in their loving support of a family member with chronic needs
..and therefore needs to be recognized and supported themselves,no matter how young.
Kudos to your family for being there- everywhere!
Posted by: anne guthrie | April 14, 2006 03:05 PM
Parents do not get it: it is not them having the sibling experience – Nell is. When she spends so much time in hospitals at age 3 that she tells the nurse what Jake needs -- that is not right. I don't say shield her from the medical parts, but,.... yes, I am saying shield her! And the fact that she knows the playgrounds of so many hospitals - can't she stay home and not travel along with him all the time? I think that her life is being shaped and defined by his life, and that is not right. Siblings deserve their own lives. It is only around other sibs that you can truly voice that opinion. That is why we need our own groups. Poor Nell - she will be writing her own story some day, if she can get over the guilt of being "selfish".
Posted by: Marsha | April 15, 2006 09:28 PM
Hi Marsha--I agree, I look forward to when the 21st century generations of sibs can write their own stories. If Nell writes hers, she'll probably tell you she's been no appendage, no bit player in the Jake Show--we're pretty careful about that, honest. This story highlights the places where her sister status comes into play, that's all. We can (and do) shield Nell from seeing her brother in pain, but we can't shield her from the everyday ways he's excluded or included.
Posted by: Penny | April 16, 2006 10:20 AM
Hi Penny
It sounds like you are doing a great job and hopefully Nell will be one of the siblings that is impacted more in a good way. As a sib of three grown men with DD I have seen and met many other sibs that were not so lucky. In my family both of my parents are gone and my brothers need care. This has fallen mostly on my older sister and she has given up her career and much of her freedom to do things that many people expect to do in their 50s. We are constantly worried about their services and what to do if they get sick. One of the big problems for siblings is that their parents don't live forever and then we have to step in.
Posted by: Nora | April 17, 2006 09:08 AM
Hi Nora, and thanks for your kind wishes. The theme of caregiving in adulthood is a common one in sibling narratives, especially sisters' narratives, but I think it's a theme that supports my point: if there were more social supports available for the whole life-course, that would serve Jake; and it would also serve Nell, by alleviating that sense of extraordinary (and solitary) obligation. When disability is seen as a private, individual "problem," families, especially siblings, are left to make things work on their own (or not, as the case may be). Whatever can refocus attention on disability as a broader issue of inclusion and rights and social responsibility is great for my son, but it also improves my daughter's future prospects for a fair shake.
Posted by: Penny | April 17, 2006 01:08 PM
Thanks Penny, Nell, and Jake for sharing your side of things: a family that isn't ashamed of the child with a disability. Congratulations-you're stepping away from the crowd.
They sure look happy together in that picture...I'm glad you're raising them together with disability history as THEIR history. There's a lot that can be learned from that. It's probably best that she understands, at her level, the hospital thing and that even hospitals are built with kids in mind (knowing their playrooms). Makes ALL kids with differences less scary.
Kudos to you all.
Posted by: Kassiane | April 20, 2006 03:57 PM
Thank you for writing this article. My son Alex doesnt have any siblings, but should he ever acquire any (!!) I would like to think they would feel the same way.
I'm embroiled in my own battle with a ball-pool at the moment after Alex was discriminated against on the grounds of his language ability. I have been simultaneously heartened by the response from those around us, who have been horrified this kind of thing can still happen, and dismayed that it still does. Clearly there's a long way to go. B xxx
Posted by: bethduckie | April 21, 2006 08:05 AM
I loved this article. There is so much hope realized recorded here. I think it is a testimony to decades of loving dedication by many and in itself constitutes a note in disability history. What lovely children you have, Penny. Thanks for the story.
Posted by: Susan Koppelman | April 22, 2006 07:09 PM
As the "kid with the disability" I find this attitude objectionable. I am being made to feel guilty about my disability. The lives of my siblings have not been enriched in any way by my disability. There may be a minority of siblings around who believe this but the vast majority do not and there is no reason why they should. Many siblings suffer socially, emotionally and financially. They are under a great deal of extra stress and strain. They are more likely to witness marital tension - if their parents even stay together. They don't get to do things because the disabled sibling can't - and it won't matter how much access etc you put in place there will be things that can't be done because of the nature of the disability.
To any parent who believes that the sibling of a child with a disability benefits from the experience I would say this, "All your children will learn from the experience and they may learn some good things. They will also learn some bad things. They will, most of all, miss out on many things. Please recognise that and don't suggest that it is a life enhancing experience because it is not and that makes us feel bad too."
Posted by: Catriona | May 4, 2006 10:00 PM
Catriona--I hear you, but I think I was pretty careful to avoid the cliched "sister's life enriched by brother's disability" story line. I didn't say that anywhere in this essay. What I'm saying is that what will make any sibling "miss out on many things" is *not* their brother or sister's disability--it's the lack of social supports, access, and inclusion. Siblings "suffer socially, emotionally, and financially" *not* because their brother or sister is disabled, but because there's a damaging cultural assumption being made that disability is just an individual, private, family experience, and not a matter of rights and social responsibility. Change that, and everyone benefits.
Posted by: Penny | May 7, 2006 09:56 PM