The inclusion debate

Daughter Leslie, second from right, was one of the original students at Alice Carlson  ALC.

I read several blogs of parents who write about parenting their kids who have disabilities.  Most of these parents have kids much younger than my own.  I occasionally comment on their posts, hoping that hearing from a parent of "kids" who are now adults, might offer a different perspective.  Occasionally I feel slightly miffed that my comments seem largely ignored, as if they are relics from the Stone Age, but I take a breath and tell myself that I'm being too sensitive, and remind myself that they are discovering something new…something that’s new for them. And it’s in the discovery that it becomes real for them.


But in recent days, a debate has been going on on Ellen's blog and Louise's blog regarding inclusion.  I admit that I have been taken aback by the vociferous tone of the debate, especially on the part of those who are adamant that their child (and everyone else's apparently) must be included in all aspects of normal life and should never be "relegated" to the ghetto of activities organized only for special needs kids.  I also feel that there is a certain amount of disdain for those of us who have chosen segregated or specialized programs of any type for our kids with disabilities and for those of us who pushed for the elimination of barriers before many of these parents were even born.  In a way, it reminds me of the disdain that Black Power groups had for the pioneers of the civil rights movement, regarding them as "Uncle Toms" and sellouts.


With so many kids, who had a wide variety of abilities and disabilities, I've had lots of experience with specialized programs and with inclusion.  My kids who were capable of doing academic work at or close to grade level were all educated in regular classrooms.  That includes my daughter Leslie, whose cerebral palsy is so severe that she cannot even feed herself.  When she was approaching kindergarten age, the diagnostician at her school tested her, and sought me out to tell me that Leslie had scored at or above her age level in all pre-academic areas.  "Good, " I said, "then you'll understand why I want her in regular class next year."  The poor woman looked shocked; our district had never mainstreamed a child with such severe disabilities before.  But it was all worked out, and Leslie went through school in regular classes, with an aide to assist her, and she now lives in her own apartment.


But I recognize that there are kids who don't do well in mainstream classes.  I pushed for Marcus to be in regular class in kindergarten and first, and it did not work out well.  In fact, school itself did not work out well, increasing his PTSD to the point that he started running away from school.  I took him out of school during middle school and his PTSD was totally resolved.  When he returned to school for high school, at first he was in his neighborhood school, in generic special education classes that were abysmal.  Goaded by other students, who asked him things like,  "Do you f*** your white mother?," his explosive behaviors  returned.  I then asked that he be placed in a pre-vocational special education program, where he made friends, was able to move to a sheltered workshop at the Lighthouse for the Blind, and was described by his teacher as so responsible that he was like her assistant.


Outside of school, my kids participated in both types of activities.  All went to vacation church school and regular after school day care.  Some went to regular summer enrichment classes, day camps, and church camp in Colorado.  But most also went to camps for kids with disabilities, sports programs sponsored by United Cerebral Palsy, and adaptive horseback riding.  In some of the regular programs, my children got hurt.  At day camp Leslie's seatbelt wasn't fastened and she fell out of her wheelchair and broke her collarbone.  At day care, Marcus got a corneal abrasion when another child accidentally scratched his eye.  I'm sure Marcus didn't make many friends at church camp in Colorado, because no one helped him locate the showers, and he stank to high heaven when he got back home.  One time I helped with Gabriel's Campfire group, and it hurt me so deeply to see how the others ridiculed him.  One advocate of inclusion just signs her kid up for t-ball and any other activity she chooses, because it's his "right," and I guess she just expects the staff to step up to the plate, so to speak.  That, in my opinion, is the path to possible disaster.  Aside from the safety factor, one has to acknowledge that it takes leadership from the staff to make inclusion work, and, if the staff is ill-prepared or fearful, they will not have the necessary skills and commitment to figure out how to meet the disabled child's needs in the group.


Lastly, I know that special needs parenting has its ups and downs and frustrations.  Everyone wants their child to have every possible opportunity and chafes at limitations.  We still have a long way to go to achieve a society without barriers, especially to employment.  But it's always a good idea to reflect on the progress we've made.  When I first got involved in working with the disabled, doctors still advised parents to place their children in dreary state institutions.  When I was rearing my children, I had to carry my daughter into restrooms because her wheelchair wouldn't fit, and I must have bumped Leslie and Cedric up and down about 10,000 steps in their chairs because there were no ramps.  Of course, we should not rest on our laurels, but today's parents should acknowledge those who paved the way, instead of denigrating their efforts because they "settled" for less than full inclusion.