Learning to Live Well with a Disability
By Nancy Kennedy
According to the U.S. Centers for Disease Control (CDC), one in four Americans lives with a disability. This disability can take many forms and may be the result of injury, illness, accident or a congenital condition. The “official” definition of a person with disability, defined in the Americans with Disabilities Act (ADA), (1990), is “someone who has a physical or mental impairment which substantially limits one or more of their major life activities.”
Adapting to life as a person with a disability may be daunting. Sometimes, a disability happens in slow increments as a disease such as arthritis or cancer progresses; other times, it happens suddenly and unexpectedly, as a consequence of an accident. In either case, there is likely to be grief and sadness at the loss of certain abilities and capacities, such as mobility or independence. But there also are numerous ways to ease the transition to a different way of life. Modifications, resources and supports abound and can make life healthy, manageable and rewarding.
Educate Yourself
Learn as much as you can about your condition and treatment. Being informed makes it easier to act as your own advocate, with medical professionals, therapists and government agencies. Keep up with the latest research about new medications or findings. Online support groups provide much sharing of new information.
Accept Reality
Although it is normal to feel sadness and grief as you experience the losses associated with a change in your health or abilities, it is also essential that you face the reality of any new limitations. Look forward as much as possible and focus on those things you are still able to do.
Ask for Help
Asking for help is difficult for many people. But you may not be able to meet all of your daily living needs on your own. Disability can be very complex, with physical, emotional and financial dimensions that require professional help. Managing your home environment may no longer be possible without assistance. Help can come from family and friends, from peer support groups, from caregiver agencies and from therapists.
Figure Out Your Financial Needs
This is not often discussed, but disability can be very expensive. Medication costs, special equipment, vehicle modifications and parking fees for numerous trips to physicians and therapists add up. Finding ways to manage this helps to relieve the economic stress that can impact overall well-being.
Practice Good Self Care
Persons with disabilities face twice the risk of developing serious chronic conditions such as depression, diabetes, stroke, obesity and heart disease, plus early death, according to the World Health Organization.
Persons with disabilities often have difficulty accessing specialty services including gynecologists and dentists. The challenges associated with these services can be daunting, but you should not neglect your health because of them. Again, be your own advocate and insist that you are accommodated in whatever way is necessary.
If you are going to see a new physician, call first to find out about access to the facility – are there ramps and elevators? What is the parking situation – do they have valets? Let the office know ahead of time if you have special needs.
Prepare for your appointments by making a list of questions and concerns. Make a copy for the doctor. Sometimes, even with preparation, it is difficult to recall everything that the doctor tells you. If you can, take a friend or relative to be a second set of ears. Write down the doctor’s answers.
Cultivate a Social Life
A person with a disability may find that it is difficult to participate in social events, and as a result, may become socially isolated. Stay in touch with family and friends and let them know if you are feeling lonely, sad, anxious or unusually tired. Learn to ask for what you need.
Depression is a common illness, and a very treatable one. Tell a friend and your physician if you are feeling hopeless or having thoughts of self-harm. There is help available. If these thoughts are urgent, call 911 or go to the nearest ER.