30 Days of Thanks Day 20 – My Personal Assistants

I regularly thank the Personal Assistants (PAs) I employ both in person and publicly. Without their efforts and dedication, I would not be able to live independently in the community. They are vital to my ability to function as the professional woman I try to be.

This year has been a rocky year for me when it comes to my PA team. I have faced employee theft, injuries, and illness in my staff. As all managers know, you are only as good as your team and it has been difficult for me to retain a quality team in 2016.

I employ fourteen women as PAs, with six of them filling the majority of my weekly home care shifts and the rest serving as per diem or back up staff. Yesterday I described Consumer Directed Personal Assistance and my role as employer in my self-directed home care program. Rather than a nursing agency scheduling and sending staff to my house, I am responsible for recruiting, training, scheduling and managing my staff. While this does offer more freedom and control, it also comes with great responsibility.

Please don’t misunderstand me – the women I employ are wonderful. They are kind, considerate, compassionate and respectful. Most of the fourteen women on my payroll have been working for me for more than three years. I am grateful to have them and recognize how limited my life would be without their service.

However, gaps in staff make it difficult to function. If my staff are unavailable and I cannot find a fill-in, I am not able to honor commitments to work, volunteer groups, or friends. I miss appointments or meetings if my PA calls out when she is supposed to drive me somewhere. When I can’t find paid staff to assist me, I must ask friends and family to help fulfill my basic needs, and unless you have had to call someone to help you pee or poop, you may not be able to understand how I truly detest having to make that call. Friends and family are kind and helpful, and do not make me feel guilty about having to call. I do that just fine on my own. That’s my issue, not theirs. Fodder for another post.

I have hired, and fired, more PAs since February than I have in the prior two years. I require more assistance now than before my femur fracture, and my established staff did not have the availability to take on my new shifts. I have used multiple online sources to advertise my employment opportunity, and have had good response. But a good response does not always yield good candidates. Since February, I have screened 48 applicants, conducted 23 phone interviews, and 8 in-person interviews. I have hired 4 people, and fired 3.

I am still looking for a PA to work some weekday and weekend shifts, if anyone knows someone looking for part time work in the Albany, NY area! Although the job does require some physical labor (the ideal candidate will be able to lift 50 pounds and will be comfortable standing, bending, squatting and reaching), it is a casual work environment and my staff routinely get to be taste testers for new cookie recipes!

All kidding aside, the job of a PA is very demanding and can be challenging. I am human, and sometimes I have a bad day or a broken leg, and I just don’t want to have to deal with people because I am in pain and frustrated – even though I need a person to be in my space so I can go to the bathroom, get undressed and go to bed. My PAs are also human, and sometimes they have bad days, or sick children, or hospitalized parents, or dying pets. When these things happen (and they have all happened this year), it can be difficult for both me and my PAs to tolerate each other.

But my PAs keep coming to work. They are pleasant and upbeat, even when I complain non-stop about pain. They help me with my physical therapy and stretching, even when I swear and grimace every time my knee moves from extension to flexion. They find creative ways to style my hair to help hide the shorter patch which is still growing back after the nurses cut it out when they removed the central line from my neck. They learn new ways of performing tasks as my body changes and I lose muscle strength and range of motion. They adjust to new routines as I settle into my new home. They are patient when I am delayed returning home because the bus was late to pick me up.

The women I hire are my arms and legs. They make it possible for me to remain active and engaged with my friends, family and colleagues. Without Michelle, Sally B, Stephanie C, Caroline, Ronda, Amie, Tina, Therese, Stephanie M, Sally W, Lisa, Sarah, Esther, and Margaret I would not be able to live an empowered life. I am grateful for all the tasks they perform day in and day out, with diligence and dignity.

30 Days of Thanks Day 19 – My Work Colleagues

I am employed by a small nonprofit organization, Consumer Directed Choices (CDChoices). I have written about my wonderful co-workers and once again I owe them an expression of gratitude for all they have done this year to help me survive. My year would have been more stressful without their generosity and assistance.

In my role as the Communications and Outreach Specialist at CDChoices, I am often called upon to explain our company’s function and purpose. We are what is known as a Fiscal Intermediary for Consumers – seniors and people with disabilities – who self-direct their home care using Consumer Directed Personal Assistance. We administer wages and benefits for the more than 1,600 Personal Assistants (PAs) employed by our Consumers. This allows our Consumers (people like me) to recruit, train, supervise, manage and terminate the PAs they employ.

I call Consumer Directed Personal Assistance the program which lets me “be the CEO of me.” I get to handle personnel – the staff I hire who assist me at home. And CDChoices is my fiscal partner, making sure my staff get paid. That is a simplistic way to explain what we actually do in the office.

Because we have a small office (less than 25 employees), we have the opportunity to develop close relationships and friendships with each other. Sure, I am closer to some colleagues than others, but I am friendly with them all. And there is not a single person I do not like or dread seeing. I am blessed to enjoy and find purpose in my paid employment.

The fall which caused my femur fracture happened in the middle of the afternoon. My boss, Elizabeth, was expecting me to log on from home to complete my work day after I used the toilet. Instead, my former PA disregarded my instructions and I ended up on the floor waiting for an ambulance to arrive to take me to the hospital.

Elizabeth is one of the most understanding supervisors I have had in my professional life, and has received several emails from me over the years with updates like, ‘My PA is late so I’ll be late today,’ or ‘My wheelchair batteries aren’t holding a charge so I need to get them repaired before I can come into work.’ I do my best to keep her aware of what is preventing me from doing my job because I know she expects me to complete the tasks for which I am responsible.

I never expected Elizabeth to come to the hospital to check on me, but that is what she did the day after I fell. She was just the first of many colleagues to come visit me in the hospital. Carol and Melissa stopped in before my surgery. Thabie brought chocolate and potato chips when she came because she heard I was craving junk food. MJ brought crossword books. I think it was Anne and Archana who brought the plant and tea, but that was during my “doped up on pain medication” days, so my memory is a little fuzzy. The point is – my work friends made life in the hospital more bearable.

My colleagues sent me flowers and cards throughout my hospital stay. When I went home, some of them brought me casseroles, soups and bagels. They stopped by for visits which helped to keep me involved with what was happening at work, allowing my mind to focus on something other than pain and rehabilitation.

My work friends also gave me the incredible gift of paid time off. Several donated their own sick time to me so I could receive my salary during the three months I was out on medical leave. This act allowed me to focus on my recovery without the stress of how I would pay my rent, car loan and other living expenses.

So, again this year I stop to give thanks to the people who I interact with each day at work. I am blessed to have caring and compassionate colleagues. As a team, we support each other through difficult days, and celebrate our joys. Your generosity this year made it possible for me to recover from a life-changing injury with less stress and anxiety. I am grateful to all of you.

The Disability Advantage

Two weeks ago, I attended a seminar hosted by a local professional group for women in development. The speaker challenged those of us in the room to consider our personal reputation, or brand. Specifically, she spoke about the importance of building, protecting and repairing our reputation as individuals and also as representatives of the non-profit organizations that employ us.

I have attended other workshops and seminars where participants were encouraged to define, curate and protect their personal brand. Usually when I sit in these sessions my mind starts to wander. I start to question how much of my “brand” is influenced by my passions and beliefs, as opposed to the skills I have developed in response to living with a disability. Many of the qualities which strengthen my personal “brand” have been honed by living with a disability.

For example, I am a creative problem solver. When faced with an obstacle or barrier, I am able to quickly scan any available resources and devise a plan of action. This comes from decades of needing to locate wheelchair accessible entrances and paths, hundreds of nights spent in inaccessible hotel rooms or friend’s houses, and eighteen years of living as a wheelchair user without any roommates.

No curb cut at the corner? I start searching for the closest driveway or backtrack to find a way off the sidewalk. My wheelchair doesn’t fit through the hotel room’s bathroom door? I measure the desk chair (they’re usually on wheels) to see if it will fit. Sure, it’s an extra transfer but at least I will be able to pee without having to go downstairs to the accessible public restroom or fitness center in my pajamas every morning. I mean, I have done that when necessary. When you gotta go, you gotta go.

My disability has also given me good executive functioning skills. These are the skills required to plan, focus, remember and multi-task. When you live with a mobility disability, you are constantly using executive functioning skills – at least I am. I plot out my fluid intake for the entire day before I even get up in the morning. How much I consume is based on when I have Personal Assistant (PA) staff scheduled to help me use the bathroom, and what other tasks I need them to complete. I select my clothes with several factors in mind – the weather, where I will be going, who will be working, and how much time is available to use the bathroom. Of course, this assumes I will have staff to help me use a bathroom which suits my needs. If I do not have a PA or if I cannot use an available bathroom, then the plan will change.

Pee math – the ratio of fluid intake over length of time – is one of the most crucial planning tasks I perform every day, but definitely not the only one. I organize my life based on the PA staff scheduled to work for me. I prefer to have certain PAs perform specific tasks, and some PAs have stronger skill sets in differing areas. Therese, who is wonderful with shopping and laundry, is unable to help me shower. Margaret hates clutter and likes to clean. When she works, I know my linen closet will look very organized by the end of her shift even if I haven’t asked her to do it. Some PAs make excellent travel companions, and there are some I would never ask to accompany me on a trip.

Of course I bring these executive functioning skills with me to my paid employment where they become part of my personal “brand.” I am viewed as a leader by my peers because of my ability to build consensus, juggle multiple tasks and think creatively. Still, I wonder – would I have developed these abilities if they were not required due to life with a disability? Would I seek new ways to approach problems or would I go with the status quo? Would I anticipate and devise contingency plans for every possibility if my disability had not made this a part of everyday life?

My disability, the one thing strangers often assume must be a negative factor in my life, has provided wonderful opportunities to gain crucial skills which make me successful in navigating a world not designed for my needs. These advantages have served me well in my professional and volunteer roles, and are an integral part of my identity and personal “brand.” It has been easy to transfer my life experiences into professional opportunities to further the mission of my employer. I am a stronger employee because of the lessons learned from disability.

What unique life experiences have shaped your personal “brand?” How have you taken life lessons and used them to further your career? I’d love to hear your thoughts in the comments!