Loneliness is the only real disability
Many people live lives of extreme loneliness and isolation. Many have lost connections with their families. Many have no friends. All too often, their only relationships are with people who are paid to be with them. Although paid professionals can offer a great deal, they frequently change jobs or take on new responsibilities.The resulting instability can be devastating to someone who is fundamentally alone.
Bob Perske describes how we might feel if we lived a life devoid of meaningful relationships:
“We have only begun to sense the tragic wounds that so many [persons with developmental disabilities] may feel when it dawns on them that the only people relating with them — outside of relatives — are paid to do so. If you or I came to such a sad realization about ourselves, it would rip at our souls to even talk about it. Chances are some of us would cover it up with one noisy, awkward bluff after another. And chances are, some professionals seeing us act this way, would say we had “maladaptive behavior.” Think about what it would feel like to have even one person come to us without pay, develop a reliable, long-term relationship with us because he or she wanted to…literally accept us as we are. Then think of the unspeakable feelings we might possess if — when others were “talking down” to us and “putting us in our place” — that kind person could be counted on to defend us and stick up for us as well! Most of us do have persons like that in our lives. But will the day come when [people with disabilities] have them too?”
For many of us, our family is an anchor to the world. We depend upon our family for unconditional acceptance and love. It is from our parents and siblings that we first learn about kindness and sharing. We learn to “come together” during times of adversity and hardship. We are shown (and shown again) that we belong to the world, that we come from somewhere. Many people with developmental disabilities rely almost exclusively upon their family for support and a sense of connectedness. Many others have been disconnected from their families. “Family” is a distant memory, long-ago replaced by services and paid professionals. While paid staff can be wonderful people, they typically don’t stay long and the resulting instability can be devastating to someone who is fundamentally alone.
The death of a family member, especially the death of a parent, can be devastating. Parents are often a person’s sole caretakers; they can be the person’s link to the outside world, their chief advocate and friend. When they are gone, the sadness does not go away quickly, the emptiness is not easily filled, and the person with a disability finds himself or herself overwhelmed by emotion. Sadly, it is these kinds of complicated feelings that a deceased parent may have most helped the person to deal with. The parent who is left behind, in addition to his or her own grief, is faced with the difficult task of explaining death and the necessity of “of letting go” of a person we love.
When brothers and sisters leave home (“move out on their own,” attend college, get married, etc.) the sibling left behind can feel a deep sense of loss. The person may be losing more than a brother or sister, he may be losing a close friend, an advocate, a personal assistant. Promises to stay in touch are often forgotten when the sibling’s “new life” takes on a “life of its own.” For the sibling with a disability, the departure can signal more loneliness, more isolation.
Ask yourself, “If the person died today, who would care?” You may wish to spend time with these individuals because they may be extremely helpful in finding ways to support the person better. If the list is short, it is important to ask, “How can the person make sense of the world (and its expectations) if there are so few people who care?” As Billie Holiday, the famous blues singer, put it, “You’ve got to have something to eat and a little love in your life to hold still for anybody’s sermon on how to behave.”
If the person does have friends and family who he cares about (and who care about him), ask, “Does he get to see them ?” If not, is it because he chooses not to or are there other reasons.” These “other” reasons may be very instructive in understanding how to support the person. For example, if the person wants to see his family but cannot do so because he lacks transportation, your support can consist of regular trips to the family residence. It may be that the person has strained relationships with his family. If so, you may have to help him reopen communication, however gingerly, and it may take time. Perhaps the person will not be able to reopen relationships with his family because there are too many wounds there. Your support may consist of helping the person to deal with the grief that comes with loss. The person may not know how to contribute to relationships. You can help by providing assistance in reaching out. The important point is, we all need relationships. It is tough to behave when there is no one to behave for.
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Are you lonely?
Loneliness affects all kinds of people. Tall and short, rich and poor, black, white, yellow, smart and not-so-smart, Republican, Democrat, Catholic, Jew — you name it, loneliness knows no boundaries. There are broken hearts everywhere.
The awareness that people who exhibit problem behaviors may be lonely brings with it a realization that the people who are supposed to help may be lonely too. We must be aware of our own capacity for relationships as we are seeking to expand the person’s realm of support. Ask yourself, How do I stay in contact with my family? How do my visits home feel? Who are my friends? Who is my partner? Do I see them often enough? What do I contribute to these relationships? What do I know about relationships and how can I use this knowledge to help the person?
It is also important to examine your relationships with the person’s supporters. How well do you know them? How often do you provide them with positive feedback about their contributions? How often do you ask them what they need? And how often do you listen?
You can also ask these and other questions of the general culture surrounding the person. Do people know each other? How often do they support each other? Does anyone listen to what the people who know the person best have to say? If you are involved in the service delivery system, you can ask “Does the organization treat staff in a valued way? ” Do staff feel that their superiors are personally concerned with their well-being?