Citizen Advocacy: Changing the conversation around special needs

CHATHAM-SAVANNAH Citizen Advocacy is a 40-year-strong community organization that initiates relationships between independent citizens who live good, comfortable lives and citizens who live hard lives because they have a disability.

Having a disability by itself does not equal having a hard life. But when the world looks at you on the outside and automatically thinks that you “belong” with “other special people” and your life choices are limited to what disability services can offer—that’s a hard life.

When you’re surrounded by nothing but paid, professional medical and social workers, and can’t point to a single friend or ally outside of the day program or the group home—that’s a hard life.

When other people are the ones making decisions about what time you’ll wake up in the morning, where you’ll live, who you’ll live with, how you’ll spend your day, and no one thinks you’re capable of having dreams and goals and navigating your own path—that’s a hard life.

The average citizen has no idea what daily reality is like for folks who are pushed into the “special needs” lane in life, and who rely on paid services for their care because they don’t have a mum or a spouse or a friend to speak up on their behalf.

Being hidden away in congregate services not only leads to tedious boredom and life wasting, but people often find themselves in dangerous and life-threatening situations.

A short-term volunteer opportunity to “help” people with disabilities does not help. It adds one more person to the revolving door of people coming in and out of the person’s life, deepening the wounding and rejection that people with disabilities feel from not having typical relationships.

Citizen Advocacy brings people together in freestanding, independent relationships that are intended to be long-term, and offers support to the advocate without mediating or “tracking” what’s going on in the relationship.

When I hang out with my best friend, there are no background checks involved and nobody is keeping a “log” of the hours we spent together (because that is 100% counterintuitive to the way people in the real world enter relationships with one another).

When measures are taken in the name of “safety” and “protection” for people with disabilities, we’re often “protecting” people so much, that we’re eliminating the possibility that they will make and experience authentic friendships with other people.

If this sounds foreign, ask a Citizen Advocate who has had to go through the red tape, fill out the forms, and face the resistance of care providers, in order to do something simple and mundane, such as picking up their friend from the group home on a Saturday afternoon to go out for burgers.

In this week’s edition of Magic Makers, I’m sharing a graphic recap of the Chatham-Savannah Citizen Advocacy Board Retreat that took place in early February. The Board hosted out-of-town guests who lead a Cincinnati-based organization called Starfire Council.

Starfire’s story is that they were once a huge congregate disability service. Through the years, they realized that all the time and money being spent taking people on “outings” (bowling, shopping, and the movies in a big van with other people with disabilities) were only filling up the calendar with activities and not actually leading to valued roles in the community where people are seen as participants and contributors with something to offer.

Programs and services cannot create rich lives for people, only other people can.

Modern congregate services make that option impossible for people with disabilities by continuing the “activity” and disability service paradigm. Some people might need accommodations, but they do not have “special needs.”

We all need the same things—to be known by other people, to have a safe, stable place to live, to experience love and friendship, to have dignity and respect, and to exercise say-so over what we see for our own future.

CS

Learn more at chathamsavannahcitizenadvocacy.org and starfirecincy.org.

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