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challenges

My earliest memory of my sister is of a very young child, sitting in a stroller, reaching out her arms to hug me. She wasn’t able to talk yet, but I was two years older and interpreted her coos and cries for the rest of the world. Most often what she wanted was to be loved, and I would run over and wrap my arms around her.

We were a loving family. The world was a happy, secure place; this despite the fact that the time was World War II.

We lived in an apartment house in Manhattan. When my mother went shopping, she would push the stroller along the sidewalk, and I would hold on to the metal sidepiece and skip alongside. It was at those times that I sensed something was wrong. People would smile down at me but then stare at my sister.

Then I heard the word and asked my mother about it. It was the first time I ever saw my mother flinch. I was immediately hushed and told not to use that word again. I didn’t until I was in my teens.

The word my mother, a courageous woman of tremendous fortitude and intelligence, recoiled from was RETARDED. My sister Maxine was, and is, retarded.

My sister was not accepted among “normal” people and never would be. She was a social disgrace. And all the while, she laughed and played. She was able to talk now and would often say, “I love you.”

Reality forced itself on my mother when she went to register my sister for public school in first grade. The principal, a blunt, middle‐aged woman, took my mother aside and stated simply, “Maxine cannot go to a normal school. She’s retarded. Just keep her home. Retarded children don’t live very long, anyway.”

My sister was lucky. She had a family that would always look after her. But what is to happen to those others? Retarded children become retarded adults. And then what? What happens to them when their parents die and there is no one to pick up the burden? What happens to those who have the advantage of the latest programs and training but now need a place to live?

Only those very few retarded at the lowest end of the intelligence spectrum cannot function, at least to some minimal degree, within a home. The state has attempted to set up hostels for these retarded adults within a home like setting, assigning five or six to each house under the care of a supervisory couple. Communities, by and large, have reacted to these hostels with hostility, fearing for their property values and uncomfortable with the ever‐present social stigma.

I find that few know anything about retardation, and I suspect that this lack of contact is responsible for the hostility the retarded face. Many think retarded people are deranged or emotionally unstable. Those are fears, not facts. Retarded people are inherently gentle and unaggressive, which makes them defenseless. The retarded are simple human beings with the same basic needs of all of us: food, clothing, shelter — and especially love.

It might seem, from my account, that it took great sacrifice to live with my sister, and in some ways, it did, particularly from my mother. But in other ways, it taught us so much. Maxine taught us compassion for the disadvantaged. She also served, curiously, to test the mettle of all we met. Those who were reluctant to accept her proved not to be worth our company. Her life showed us, by example, what the most important values should be. Maxine did not understand affect, materialism or hypocrisy. She did not understand social embarrassment. She has the same basic concern for the dog that lives in the next apartment as she does for its owners. It is a respect for all life, and for her, life is music, and laughter and love.

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