Before you begin the process of hiring an agency or your own personal care attendant (also called a home health aide or caregiver), several major issues must be considered. Living with a disability is scary. It can be frightening, because you don’t always know who will walk through your door to assist you, whether it is a prospective aide applicant or a mystery aide from a home health agency. There is a good chance that many of us will face this type of dependency. For example, the Baby Boomers (those born following World War II, the generation from the late 1940s to the early 1960s) are quickly approaching the age at which assistance from others is going to be needed.
Asking for help and accepting it goes against our free will. It is human nature to want do things on your own. However, if you do need the help of others, you are not a weak person. So get that chip off your shoulder, if you have one, admit that you need help, and go on with the rest of your life. Do I like depending on others to help me every day with my most intimate needs? No, I don’t! But not getting my bladder emptied or not taking a shower sound like pretty painful and stinky options.
There is no such thing as an “easy” disability. They all force limitations on the people who have them, although some people who have an emotional disability can be more paralyzed than I am. My wheelchair and I can go anywhere I want to, provided the terrain is smooth. But I have heard of people with anxiety disorders who don’t leave their home for days.
Living with a disability requires two forms of acceptance. The first is the acceptance of who you are. I am now a person with a disability, but I am still basically the same person I was before I became disabled. However, my disability has educated me in so many wonderful ways. I’ve learned all about patience. I’ve also learned that life isn’t always fair. Bad things happen everyday and to everyone. But the trick is to see the beauty in the bad and the value of all experiences. I’ve slowed down— well, my wheelchair made me slow down—and I now see the bonuses of my paralysis. A lot of good has come my way since becoming a “woman on wheels.”
The second form of acceptance is learning to accept the dependency upon others that you need to help you with your personal care needs. Prior to my paralysis, like most people, I was a fully independent person. I made a modest living, paid my bills, and had fun with my friends and family. Paralysis not only showed me that I needed to slow down, but it taught me how to ask for help every day for the rest of my life. These two things are not easy to do, but I’ve learned how, and if I can do it, so can you.
Like it or not, as a person with a disability, you have become an employer. This will include all the duties that any employer undertakes—hiring, firing, scheduling, payroll, taxes, advertising, record keeping, and managing others. A person cannot afford to have a casual approach to finding caregivers; you can’t sit back and wait for an aide to magically appear. It’s hard work. If the person who needs a caregiver is unable to make decisions about his or her own care, the person with the utmost concern for the individual who needs personal care should be the one looking for the attendant.
My final words of advice on preparing yourself to bring personal care attendants into your life are: Be a person who others want to be around. This doesn’t mean you have to always be “up” or “happy.” If you are down one day, that’s fine. We all have bad days. But snap yourself out of the “disability pity party.” Also be open to all types of people. Let go of the prejudices and barriers that seem to set us apart from each other: religion, color, size, sexual orientation, political affiliations, and ethnicities. Life would be so boring if we were all alike. So—viva la difference!