Build Family, Lead with Dignity, Seek Relationships
Ann shares her final thoughts: Families are the core of our society and families orchestrate what their children’s lives will be about - build family and seek relationships. In disability policy, we need to work toward “the big four” - equality of opportunity, full participation, self determination, and economic self sufficiency.
I'd say first think about dignity and what is it in your own life that brings you a sense of dignity, and then, "How do we provide the opportunities for your child to not be in a second-class situation?" To not have a program that's, "Oh, that's the program that those other children go to," but to really think of what are the aspects that connote respect and esteem and value.
So lead with dignity. I would say the family is the core unit of society, and you, as your child's parents, um, are orchestrator of what your child's life is going to be about. You can't run a marathon every day without giving out. That you have to pace yourself, you have to take care of yourself, you have to nourish your body and your soul so that you in turn can nourish your child's body and soul.
And to build family, to make sure that the brothers and sisters and the cousins and the aunts and uncles and grandparents feel comfortable and competent to know how to interact with that child with a disability, but to get chosen family, neighbors and people from your faith community and people from the scouting program in town or from the arts program or from the music program.
Seek relationships, because it was so clear to us and our family that as terribly important as Jay's federal benefits were in terms of social security, nothing was more important than relationships. It is the people who open doors, and we have to nourish those people and bring them into our family.
I would also say think about where do other children the same age... what do they do? And there's no reason why your child with a disability shouldn't have those same opportunities if your child would like to do those same things. So don't pull yourself aside, but put yourself in the middle of the community.
And then I love... I call 'em "the big four." And the big four, in my book, is not the Final Four of basketball, but the big four is what is in the Americans with Disabilities Act and what is in the Individuals with Disabilities Education Act. Our country's disability policy has four major policy goals, and I really want families to embrace these from the outset. The first is equality of opportunity, same opportunities as others.
The second is full participation, so participation in all of the activities and opportunities of others. Independent living. And independent living doesn't mean doing everything by yourself, but it means self-determination. It means choosing how to live your life.
You're independent when you choose who you wanna depend on. I wanna depend upon my husband. He does many things in our household that frees me from doing those. I don't do every task myself, but I choose how those tasks get done.
And the fourth one is economic self-sufficiency. And so if families can have these big four and to know that that's their guiding principles and the more that they work toward those goals, the more that the life of their child with a disability is going to flourish and be enviable.