Loneliness is the only real disability.
Many people with disabilities, young and old, live lives of extraordinary isolation. Some depend entirely upon their families for support. A brother or sister or mom or dad are the only source of company. Friends are often absent altogether. All too often, the only relationships people have are with paid staff. Although staff can offer a great deal, they change jobs frequently or take on new responsibilities. The resulting instability can be devastating to someone who is fundamentally alone. Here are some ideas for helping people to develop "enduring, freely-chosen relationships"*:
Remember that there are many people in the community who will benefit from knowing the person. Chances are the person has already made someone's life fuller. Be confident that she will make someone's life fuller again and again and again.
Become the person's champion (if you can't, help the person to find a champion). We all need someone who thinks we are special. People with difficult behaviors often have no one who thinks about them with unconditional regard. Become the person's champion. Make a commitment to help the person to find joy each day. Help others to see the person's strengths and gifts rather than limitations and shortcomings. Instead of being one more person who "works on" the person, be someone who sees the person's gift, someone who thinks they 'hung the moon.' If you can't be the person's champion (for whatever reason), take responsibility for helping the person to find a champion. It's powerful medicine.
Remember to speak about the person in a respectful fashion. Speak about the person's struggles in a way that is respectful of those struggles. Let the person overhear you saying good things about him/her.
Never underestimate the corrosive influence of congregate models of care on your ability to help the person establish enduring, freely chosen, relationships. Move towards intimate housing arrangements and individualized day supports whenever possible.
Learn to tell the person's story in a way you would want your own story told. Make a list of the people who "hold the person's story." Help the person to make connections with these people. Be sure the person's story is told in a way you would want your own story told. Practice deliberate acts of kindness (in short, help the person to reconnect with these people with something to give).
Help the person to find people in the community who love the same kinds of things. Make a list of the things a person loves to do. Find people in the broader community who love to do the same thing. Show up again and again....and again. Pay special attention to who goes with the person. The person providing support should ideally love the same activity.
Get off the "disability dime." Help the person to make a contribution to the broader community. Draw a circle one mile in radius around the person's life. Chances are good that there are people in the circle who are doing good work for the broader community. Help the person to show up in those places to help do that work.
If the person continues to struggle with relationships, ask these questions from Linda J. Stengle's book, Laying Community Foundations for Your Child With A Disability:
Is the relationship between the person and the other person unbalanced?
Are there too few mutual interests?
Is this an activity that the person really wants to do, or is it something you want him/her to do?
Is the activity long enough to encourage the development of a relationship?
Is the other person afraid to get close to the person?
Is the other person too busy to take time to get to know the person?
Are needed accommodations being made to allow the person to participate fully in the activity?
Could your presence be interfering with the development of friendships?
Do the same people tend to participate, or are there different people every time?
Are there breaks, joint projects, or committees which allow people to talk with each other freely?
Is the other person in the relationship mainly out of a sense of charity?
Is there enough structure to the activity?
Is the person projecting an attitude that is keeping others away?
Do you think that something is preventing the other person from seeing and appreciating the person's good qualities?
Notes: The term "enduring, freely-chosen relationships" comes from the work of John O'Brien. The above questions are from Linda J. Stengle's fine book "Laying Community Foundations for Your Child With A Disability: How to Establish Relationships That Will Support Your Child After You're Gone." You can purchase a copy by calling Woodbine House, Inc. at 1-800-843-7323.
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© David Pitonyak, Ph.D.