Many people with disability lean on other people for their needs. They may not want to do this, but sometimes it is the safest option, if not their only choice.
My husband has hemophilia and a seizure disorder. He doesn’t risk going out on his own without a companion, because he knows that if he has a seizure while out by himself, he could get into a life-threatening accident without anyone knowing. So when he does go out, we go out together.
He admits it often saddens him that he can’t get a license to drive. He feels that he should be the one behind the wheel, not me beating myself up with directions (I’m bad at them) while dealing with annoying Metro Manila traffic. It’s in his nature to want to do things for others, and he doesn’t like having to rely on me for this one task.
Since my husband cannot drive, he also lacks interest in things remotely connected to driving. For instance, he easily loses his calm over car accidents. He tells me vehicles aren’t within his domain, because he doesn’t drive in the first place. This stresses me out, as I could use some help with these difficult tasks!
Nonetheless, I do understand the root of his frustration. This is why I’m a staunch champion of giving disabled people independence. How else can they deal with life’s difficulties and be our equal partners in figuring out solutions to common problems?
It’s Not About Pride
People often (wrongly) connect a desire for independence with pridefulness. Shouldn’t people be humble and know when to seek help?
While that is no doubt true, I bring in a second argument: people often do not know what they are capable of until they have tried. This is why it’s so important for people with disability to spread their wings — they need to know what they can do.
Sadly, carers may unwittingly discourage their disabled loved ones from ever trying, out of fear or convenience.
Perhaps their carers fear that they might hurt themselves in the process. Or they might feel responsible in some way and don’t want to deal with the aftermath of a screwup. This is understandable, but not a great idea for the long-term.
Carers cannot always be around to mind them. The idea of another person being present 24/7 is often an illusion. Carers have their own lives, too. Plus, it’s unhealthy for anyone to sacrifice their whole life for another person’s sake. They must tend to their own personal needs as well.
Independence to a person with disability is NOT a matter of pride; it’s a matter of survival and self-care. It’s about being self-sufficient and ultimately finding meaning in life.
A Meaningful Life
According to this article on The Conversation, there are three components of meaning in life:
- purpose: having goals and direction in life
- significance: the degree to which a person believes his or her life has value, worth, and importance
- coherence: the sense that one’s life is characterized by predictability and routine.
When a person depends on someone else for their basic needs, they may need to compromise to a certain degree. They recognize that they must keep a peaceful relationship with their carers — even at the expense of their own freedom. For example, if an adult person with disability moves in with their parents for economic reasons, it may be logistically or emotionally difficult for them to go after their goals. They might not even be able to take the risks they must take in order to succeed, because their parents will always think of them as children and try to keep an eye on them.
Their parents might be loving and compassionate people, but they might want to keep things a certain way in their home. On the other hand, the adult child might want (or need!) things another way. In the end, they would both have to compromise and the young adult might fall short on his or her goals. It’s just a fact of life: people at different stages of life have differing needs. Ideally, older people should support younger ones and help them attain what older generations have already achieved.
And that brings us to the third point — we humans are creatures of routine.
We like things to be predictable, to a certain extent. Routines make our lives easier — they allow us to do things without expending too much mental energy. By the time we reach a certain age, we are pretty much set in our own specific routines. We’re lucky if our routines are similar to someone else’s, then we might get along. But in many cases, what someone likes to do in their private space might clash with what another person likes (or finds acceptable).
For instance, a busy young millennial might regularly have breakfast in their underpants. If it happens repeatedly and without their mindful knowledge, it becomes a routine. Such a routine might shock an older parent due to a difference in personal values (an internalized culture of modesty), or due to the fact that they may have simply developed a different routine in their own young adulthood.
A Sense of Control
Many people view control as a bad thing, but the truth is that we do need some degree of agency over our own lives. Psychologists speak of a concept called the locus of control, which can be either internal or external. When we know that we can make our own choices, and believe that our own actions can make a difference, we have an internal locus of control. We become more confident, happier, and better equipped to cope with life’s challenges. On the other hand, if we feel that other people or outside forces are controlling us, our locus of control becomes external, and we may suffer from poor physical or mental health.
If we really care about our disabled loved ones’ mental health, we would encourage them to be more independent, and give them leeway to do things in ways that work best for them. We should learn to let go of what we think is right, and acknowledge that we can only see things from our perspective. That way, we help them gain a sense of control over their seemingly out-of-control lives.