Enjoying life comes down to the personal choices we make. How will we spend our time? How will we spend our money? With whom will we spend our time? Choices give our life meaning. Those choices, and others, are referred to as self-determination.
People with disabilities often are not allowed the opportunity to make their own choices. Things like what to have for a snack, what movie to see or whether to take an afternoon nap. Even people who live with family often lose the freedom of choice. Sometimes, they may not be allowed to exercise the right of self-determination.
Self-determination involves choice. But it also involves responsibility. The responsibility comes in facing the consequences of those choices and of giving back to the community.
Consequences can include running out of money after spending too much on something that we wanted to buy. A consequence might be missing an appointment because we failed to arrange transportation. A consequence is losing our job because we did not to go to work for our shift. People without disabilities have the opportunity to learn from the consequences of their mistakes. People with disabilities should have this opportunity, too. Self-determination includes taking risks, failing, and learning from those mistakes.
That’s not to say that families should stop all support and sit back, letting the person do whatever they want. It does mean, however, that families should be constantly moving their loved one toward more independence and more choice. It is important that family and friends give support and direction when needed.
Everyone wants to contribute to the community in their own way. Everyone has their own gifts to give. It’s no different for people with disability. Whether it’s with our presence in the room, the music that we play, or the work that we do, everyone wants to give back. Everyone has the responsibility to do so. Self-determination means that everyone contributes in their own way.
Families help support their loved one’s self-determination by taking small steps in the right direction. Adding simple choices each day helps give the person more control. Examples are what to wear, what to eat, what to do for fun, where to volunteer, what to buy.
Adding to their loved one’s responsibilities is another way to grow their self-determination. It can involve self-care or chores, earning and spending money, and caring for their belongings.
While most people value freedom of choice, choice is the first thing taken away from a person with a disability. Self-determination in the form of choice and responsibility adds quality to a person’s life. Everyone should have the freedom to make choices about their own life.
Self-Determination.Org offers helpful information and tools for self-determination, including a Self-Determination Inventory. The National Gateway to Self-Determination also offers resources and information for families, people with disabilities and professionals. And, while you’re here, take a look at our page on Transition to Adulthood – Frequently Asked Questions for more on self-determination and related topics.
Most times, there is a reason behind the behaviors a person exhibits. It makes a difference to take the time to learn the meaning of the behavior.
A good life needs to include things that are important for the person as well as things that are important to the person.
What happens if traditional respite doesn’t work for us? How do we, as caregivers, still find a way to recharge? Sometimes respite looks very different from one family to another.