Grendel’s Kitchen

“More” is her very favorite word: it means more eggs, more book, more music, more dancing with daddy, more throwing rocks in the pond, more feeding the chickens from her hand, more of mama’s crazy driving, more of her grandparents spoiling her, more time with wonderful friends, and so on. And that’s what we want for Li-Li, too: we want her to have more access, to have more opportunities, and to always reach for more.

When I hear her little voice, clear as a bell, call out: “more cheese please” or “more tiger, rooaaar” when looking delightedly at a passerby in an orange and black striped shirt, or when Li-Li excitedly signs ‘man drive stroller’ upon seeing someone mowing a lawn with an unfamiliar piece of equipment, I silently run through a whole looong list of so many people I need to thank for these moments. In addition to all of the wonderful family and friends who give so much joy and support in many forms, there’s a whole list of amazing professionals we’ve come to know, who have devoted long hours to giving Li-Li more. People like Drs. Clark and Roberson, audiologists and CI team members like Jill, Stacey, and Sarah at Children’s Hospital, teachers, caregivers, and other professionals at TLC, both deaf and hearing, like Nancy V, Susan, Carol, Maureen, Mary Jane, Nancy, Jennifer, Karen, Kelly, and Anna, SLPs like Christine at TLC and Laurie at Enable (EI), our deaf advocate Rosalee at the Mass Commission for the Deaf & HOH, and oh gosh, so many more.

But a common element in this list is that these people are able to work with Li-Li because of our amazing healthcare insurance and social services. So, today, while ‘blogging against disablism’ (shouldn’t that actually be ‘blogging against ablism’ or ‘blogging for disablism’?), I want to point out an amazing article posted just last week by Michael Bérubé, Disability and Democracy, and mention how critical our political choices are to the lives of our children, to what opportunities they have: Li-Li would not be speaking nor signing as beautifully as she does today without healthcare, social services, disability services.

I struggle with terminology all the time: Li-Li is profoundly deaf, her cochlear implant provides some hearing ability when on (although only when it’s working, Cochlear Americas: please fix that processor!). To paraphrase I. Jordan King, we know she can do everything a hearing person can do but hear. And we’re working on that ‘but hear’ part. So, does Li-Li have a ‘disability’ or a ‘difference’? My dear friend Brooke says it’s something very special: a ‘diffability.’ I like that! But on a practical level, what are the right words and terms that conjure up the health care, the surgical care, the bionic equipment, the education, the audiologists, the early intervention services, the speech language pathologists, the sign language instructors, the CART services, the interpreters… . I know I’m being greedy, but we want much more for Li-Li than we can provide: more expertise, more technology, more services, more education, more language, more opportunities, more ability. So, which term gives Li-Li more? And which politician provides more for children with disabilities or differences?