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4:40 AM

4:40AM

“4:40am? You are getting up every day at 4:40am? I can’t believe it. Honestly, I don’t think I could ever do this.”

Miriam beams. She loves to hear these responses to her early morning routine. Waking up at 4:40am is what she’ll tell anyone about herself. She’ll also point out that the bus picking her up for work will arrive at 5:20am, sometimes earlier, and that she’ll need about half an hour to shower, get dressed, and eat breakfast. The evening before, she’ll have laid out the clothes she’ll wear for work the next day and also set the breakfast table for herself.

Miriam is my thirty-one year old daughter and living at home. For more than a decade, she has been employed by Bank of America (formerly MBNA). Miriam earns a salary, is paid benefits, and has a generous vacation package. Like for all of us, work gives structure to her life and, even more importantly, provides her with an identity, a young professional woman who earns her own income. Miriam takes tremendous pride in her work, and she loves to talk about it.

There is also another side to Miriam’s full-time employment: knowing that Miriam is safe and meaningfully engaged allows my husband and I to focus on our work. Over the years the three of us have been able to develop the kind of routine that is common to most working families. Monday through Friday; the weekends; the summer; family celebrations and holidays – our life almost feels normal, almost.

Miriam was born with a cognitive impairment caused at birth. I recall her early childhood years as a seemingly endless succession of visits to specialists, hospitals, and therapists, trying to get a diagnosis, adjusting to the new reality. Miriam cried for most of her waking hours, and many days I felt in total despair. Then came the school years, the special-education track, classrooms with children exhibiting behavioral, not cognitive problems, and Miriam, shy and timid, trying to come to terms with the noise, the disruption or eating lonely lunches in the cafeteria. Riding the school bus could be an ordeal, sitting alone in her seat, a casual “You retard” flung at her. Miriam persevered through though all of this and now enjoys all that work provides her with.

For work is what’s called a “master category”, i.e. the very foundation for economic independence, individual self-esteem, and social recognition. However, the unemployment rate for people with intellectual disabilities is estimated to be between 75% and 80%, a staggering statistic indicating the dire lack of employment opportunities. The call for “close all work places that are not fully inclusive”, as voiced so strongly by the self-advocacy movement, well-intended as it may be in guarding against exploitative work environments, is dangerous and misguided. Vigilance regarding demeaning and abusive conditions: Yes! Vetoing all non-inclusive work environments: No! The latter would send scores of cognitive impaired employees back to sitting at home, bored and frustrated, their caregivers worried and unable to help.

We treasure the 4:40am routine!

Permanent link to this article: http://www.familiesspeakingup.com/2012/11/13/440-am/

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