Please visit www.TheTroubleWithJerry.org. As many know, the Academy of Motion Picture Arts and Sciences has decided to give Jerry Lewis an Oscar for his “humanitarian” work for the MDA. During his decades of hosting the Labor Day Telethon, Jerry Lewis has helped to perpetuate negative, stereotypical attitudes toward people with muscular dystrophy and other disabilities. Jerry Lewis and the Telethon actively promote pity as a fundraising strategy. Disabled people want RESPECT and RIGHTS, not pity and charity. Join us in protesting this action. Visit the website, add the website to your own blog, sign the petition to the Academy, come to L.A., or plan a protest in your own city.
today while dropping kids off at camp
July 20, 2008 By 1 Comment
First, Happy Birthday Heather! My baby is 18 today.
We drove up to Rocky Mountain Village, the local Easter Seals camp to drop off my two younger kids for a week of camp. (Heather goes in a couple of weeks). I was in my 12 year old’s cabin, helping her get settled when one of the other girls, asked incrediulously: “are you really her mom?”
“Yes.”
“But you use a wheelchair?” The kiddo was also a chair user. She must have been 11 or 12, although she may have been a bit older. “I’ve never seen a mom in a wheelchair,” she said. She just chattered away for several minutes with many questions. At one point she asked, “could I be a mom?” Clearly her counselor was uncomfortable with the question, but I just plowed headfirst into an answer,
“Of course!” The girl still had a million questions, but I needed to finish settling my 9 year old. My 12 year old was tugging on my arm.
Asiza was nonplussed. She couldn’t figure out why this girl wanted to talk to me so much, and she was more concerned with getting me to just go, go out the door. At almost 13 she isn’t particularly interested in me talking to her friends, but she was utterly confused. She didn’t get what the big deal was.
All my kids were older when they were adopted, but none of them have articulated anything about me using a wheelchair or not. Now, all three of my kids have cognitive disabilities, but this is the kid who would have articulated something. In her case, her bio sister was adopted by a family with a crip mom too, so I think for her, the concept of a disabled parent is completely normal.
The interaction, however, made my heart feel empty. While I am glad it happened, it continues to bother me that girls (and boys) with disabilities grow up and don’t think parenthood is possible for them. I know it happens, but it still makes my heart empty.
So Eden, of course you can. You can be whatever you want to be.
Tiffany Callo redux
December 28, 2007 By Leave a Comment
Sabreena Westphal, formerly known as Tiffany Callo, is engaged in a fight for custody of her youngest child. Westphal, whose struggle to regain custody of her oldest children was the subject of a book A Mother’s Touch: The Tiffany Callo Story. Like most parents who have been involved with social services, the birth of a new child brought instant scrutiny from child protection workers.
Reportedly, Westphal has inadequate attendant support, lacks adaptive equipment to allow independence, and has been slow to meet the requirements of her treatment plan, and predictably, her parental rights are at risk. If the facts are as reported, Callo and her partner aren’t ready for her daughter to be home at this time. Putting aside the systemic issues that put Westphal in this situation, there are better options than our current system to provide permanency and security for children, while at the same time allow children to be nurtured and loved by their birth families.
So often, child protection workers admit that parents like Westphal love their children, but that they don’t have the skills to parent them. In response, they terminate parental rights and allow the children to be adopted by another family. While we don’t allow birth families to treat their children as chattel, we instead commodidize the children as chattel for their adoptive families. We need to rethink our child protection and family preservation systems so that they really do act in harmony and in the best interest of children and their families. Parents like Westphal can be a positive and nurturing influence in their children’s lives, and their children in theirs, but our system does not allow that to happen. Termination of parental rights and adoption preclude courts from ordering continuing contact, even when it is in the best interests of children. As demonstrated by what happened with Westphal’s older children, continuing contact with children after adoption is at the whim of the adoptive parents, not based upon what is in the best interest of children. It is possible to develop legislation and public policy that allows children the permanency adoption offers, while at the same time preserving those crucial ties to their families of origin. The more loving resources in a child’s life the better, but our system does not allow for that option.
I will blog a bit more about the myth of best interests, and family preservation in later posts.
good news out of Montana
December 27, 2007 By Leave a Comment
This evening I got good news from Marsha Katz in Montana.
Three years ago Livingston, Montana social services decided decided that Geri Glass, a woman with quadriplegia, would neglect her newborn son, Gage, if he was permitted to remain in her care, based solely on their perceptions of her disability. Social services mandated that Ms. Glass never be alone with her son until he was over the age of 12, and that she create a safety plan for his care from infancy through adulthood. They demanded a 24/7/18 year plan to “ensure Gage’s safety.” During one meeting, social services explored placing Glass and Gage into a nursing home, without her consent, and tried to force Glass to give her son up for adoption. Social services told Glass that she was required to have 24/7 attendant care to assist with Gage until he was 12 years old, or she could assign guardianship of Gage to someone else for 12 years. Glass moved in to her aunt’s inaccessible home, to keep her son with her, and fought to be able to return to her own, accessible home, where she could care for Gage with attendant care.
Despite their threats, social services never filed a court case, which meant that Glass had no way to seek review of social services’ actions. Glass prepared to fight social services, and the media got involved. In the face of negative publicity, social services closed their file on Glass. Glass filed an ADA complaint with a state agency, and last week received a ruling in her favor, finding that the state of Montana’s Department of Public Health and Human Services (“DPHHS” discriminated on the basis of disability, and that the DPHHS retaliated against Glass for attempting to advocate for herself. The remedial phase of her case continues.
A pdf. version of the decision is posted on the disabilitypride.com site.
the usual Christmas
December 26, 2007 By Leave a Comment
It was Christmas as usual (and unusual) at our house this year. My 17 year old had a cold as usual. I couldn’t find aides to work as usual. I burned part of Christmas dinner, as usual. It was unusual in that it was my 12 year old’s first Christmas at home (we went out of town last year for her first Christmas since joining the family). It was unusual in that we had a White Christmas with a record-setting almost 10 inches of snow. Typically Denver does not get that much snow, and it is very unusual to have White Christmas’s two years in a row. Kids here are more apt to be able to ride their new bikes on Christmas day, rather than use their new sleds.
My 17 year old got her usual gifts — a new slinky, a new set of handbells, and some electronic v-tech toy that lights up and vibrates. And, per usual, she had no interest in the gift wrapping or unwrapping. She has no joy in unwrapping gifts, and will explore them only after they are unwrapped and handed to her, provided she doesn’t have something better to do like sleep. I’ve finally stopped trying to create parity in numerosity and value between her gifts and the gifts her sisters get. She doesn’t care that I can buy her slinky off the dollar rack, or that her bells cost less than $15. They are the things she enjoys, and that is the point of gifts. Of course I do wrap up necessities like socks, toothbrushes, and new pajamas like I do for her sisters, but that is for our benefit, not hers. I always try to come up with a gift that is something she will enjoy, but that is new and different. This year it was a bead curtain. She enjoys it, but doesn’t get the gift part.
For years I have felt guilty over the inequality of her gifts, her lack of excitement, and even my attempts to force her involvement in the trappings of Christmas. I think I am over the guilt about the gifts, but I feel like I am walking a tightrope, balancing between letting her be herself, and accepting who she is, and pushing her to be more socially involved. I never know what the line is between letting her be herself, and allowing her to withdraw into her own world without interacting with the rest of us. Sometimes that line is bright. On Christmas morning, when she refused to wake up for gift unwrapping, it was clear she was choosing not to participate, and there was nothing I could do about it. I put her back to bed, and left her gifts under the tree until she woke in the afternoon. Sometimes she has to participate in something because the rest of us are — like Christmas Eve services at church. At other times, there are glimmers of enjoyment. She seems to enjoy me reading ‘Twas the Night Before Christmas, especially as my signing skills have improved, and I don’t have to skip parts because I have no idea how to sign things like reindeer. She definitely enjoys going to the Nutcracker.
The tightrope feeling remains about so many other things, at Christmas and year ’round. I am not sure where that line is of including her, forcing her involvement, and allowing her to have some measure of self determination that is appropriate for a young woman who is nearly a legal adult.