A Happy Compromise

Tips for achieving quality of life and independence by living with paid personal attendants and their familes

Article Highlights:
  • Having reliable personal care assistance is the key to independence for many with neuromuscular diseases.
  • Margaret Nosek, who has spinal muscular atrophy, describes her unique living situation, which allows her to maintain an active personal and professional life.
  • Nosek shares her home with paid personal attendants and their families, and offers tips for making this kind of arrangement work.
by Margaret A. Nosek, Ph.D. on December 31, 2009 - 1:19am

QUEST Vol. 17, No. 1

A wise friend at my Quaker meeting once told me, “It’s a ministry to offer help, but it’s also a ministry to accept help.” Let’s just say that my life situation has given me quite a lot of opportunities to exercise the ministry of accepting help!

I was born with type 2 spinal muscular atrophy and left home for graduate school at age 25 never having had anyone except my mother help me with my personal needs. It was quite a life shock to suddenly have someone help me because I paid them, not because they loved me.

After struggling to overcome my own naïveté about helping relationships, and also struggling for many years to earn enough so I could pay my attendants a decent wage, I’m happy to say that my main attendant has been with me for 14 years. My other two attendants (for evenings and weekends) have been with me for seven years and three years, respectively. That’s a major accomplishment that takes hard work every day to maintain. Three of my attendants live with me, along with their children (although there is usually only one attendant in the house at any given time). It takes about 60 percent of my salary to live like this, but I happily pay because it’s the price of my freedom.

I understand that many people struggle with the decision about when and how to open their lives to personal care provided by someone outside the family. Let me share some of the lessons I’ve learned. I owe a huge debt of gratitude to my mentors, disability rights pioneers Justin and Yoshiko Dart, with whom I lived during graduate school and from whom I learned valuable techniques for sharing my life with those who keep me alive.

There are no Anne Sullivans

After reading about Helen Keller and her lifelong companion, my parents and I somehow came to believe there was one perfect person out there who would dedicate her life to me and meet all my needs. This is a heartbreaking myth.

It takes a lot of exploration and experimentation to discover the person who best meets your needs and learn how you can best fulfill their needs. It’s unfair to ask one person to be available 24/7 and always come with a smile. Although it costs more to split up the job among several people and still pay a respectable salary, it’s well worth the benefit in security and sufficient rest for all.

Remember you can’t live one day without them

I always resented the advice to be grateful. Being rebellious by nature, the attitude I had when I left home was that help was my right, my entitlement. I was paying to have help when I needed it. How painful it was to remove that poison from my worldview. After having to hold it until my bladder was bursting because someone showed up late, after being forgotten and left on the toilet for hours, after having attendants walk out without warning, I learned the hard way that help is not an entitlement. What is called for is not groveling but merely accepting the humanity of the other person. We all have a need for dignity, compassion, love and caring. If we want to receive it, we have to give it.

You have to give more than you receive

For many years I had students working for me. You can never be the first priority for a student — school is always highest on their list. Later, I hired individuals who did personal care for their living. When they worked for me by the hour, there were few problems. Living in, however, was a different story. The key to success was figuring out what they needed most besides money and then doing whatever I could to provide it. I’ve had the most success with individuals from other countries because some of the life quality things they needed I could easily give. As a Spanish speaker, I could offer them a comfortable environment where communication was not an obstacle, a chance to learn English, and help with their citizenship paperwork and processing. Most of all, I could offer a safe and mostly peaceful environment with plenty of food they liked.

Personal space and shared space is the magic combination

When I was searching for a house with a sufficient number of bedrooms, I looked at one that had a closet-type room with a tiny window for the “help.” I was mortified by the attitude of class superiority that reflected, bordering on slavery. I’ve always offered my live-in attendants accommodations on par with my own. I freely share the living room and kitchen, but everyone knows that my bedroom is my sanctuary — as is theirs.

References don’t tell you very much

Asking for references is a way to get applicants to tell you upfront about skeletons in their closets. Only occasionally do I call references. I’ve found you really have to dig to get them to speak honestly. One of the keys to effective interviewing is judging character by a person’s manner, appearance and responses to my questions. Sometimes I can tell right off that it would be a bad match, such as very long fingernails, excessive perfume, arrogance and inconsistencies. When I find out it’s a bad match after hiring, it’s best to end it right away.

Isolation breeds violence

For many people, fear of someone taking advantage of them prevents them from even considering hiring an attendant. Yes, I’ve experienced stealing and emotional violence on occasion, and yes, I’ve had fights with attendants that would have resulted in fisticuffs, had I been able. Above all else, direct communication, negotiating behavior contracts and remembering your core of serenity are the best tools for resolving conflicts when you really want to maintain a relationship. Research shows that isolation is a breeding ground for violence. I’ve developed a strong network of friends, neighbors and former attendants that gives me the strength and security to dismiss people when they step over the line, like refusing to help with something essential or abusing my property. It also serves as protection in times of trauma or emergency.

Role separation is very hard to maintain and may not be worth the effort

It’s not too hard to remember that hourly workers are your employees and don’t have to be your friends; it’s more difficult to do when they live with you. But I’ve found that the best working relationships evolve from a mutual respect and appreciation that goes beyond employer/employee. I enjoy being part of the lives of my longtime attendants. Sometimes this level of closeness enables both of us to push the limits, but the benefits outweigh the negatives. I can’t imagine either extreme of role separation. People with disabilities who have their spouse as their only attendant are playing with fire. It takes a tremendous amount of work to prevent the isolation and abuse that’s so prevalent in this type of intimate arrangement. But the other extreme — maintaining distance and strict avoidance of emotional and social relationships — would so diminish my quality of life that I want no part of it. A balance is good, but tipping toward the personal is better.

I strongly urge parents of children with progressive muscle diseases to use attendant care very early on, even if it just means sending your child away to camp for a week each summer. When children with significant physical care needs reach adolescence, it’s obligatory that they learn how to work with providers while they still have the safety net of available family.

When physical care needs develop later in life, it’s much more difficult for people to open their homes and lives to strangers. My advice is to weigh seriously the benefits versus the sacrifices, with due consideration of attitudinal barriers and unfounded stereotypes.

In all these situations, peer role modeling and peer counseling are invaluable. Independent living centers offer these types of services. We’re lucky to live in times when assistance for independent living is much more available. With the encouraging progress in Congress of the Community Choice Act and long-term health care reform, we may even find that personal assistance services will become more affordable. Our vocal advocacy toward that end is what will make the difference.

Peg Nosek, Ph.D., 57, is executive director of the Center for Research on Women with Disabilities and professor in the department of physical medicine and rehabilitation at Baylor College of Medicine. She lives in Houston, Texas, with her three attendants and three godchildren, ages 7, 6 and 3.

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