Being a professional with a disability is like working two careers:

* The one I get compensation for - leading organizations to adapt continuous change.

* The other career - managing an organization of personal support workers to allow me to have a full life.

This post about the later, managing my care. Recently I came to the realization that not every professional in the world has to deal with this…and it is a very stressful activity. Before I go any further, I recognize that everyone has things to do in the morning to start their day…and I’m not saying mine is more, rather unique.

With my Cerebral Palsy (CP) I need help getting up in the morning to get out of bed, dress, help with my workout, shower, shave, and dress for work. I hire personal support workers to help me with this. Although my wife assists me in emergencies and vacations…I prefer to keep the role as wife and support worker separate. I am responsible to recruit, interview, hire, train and manage my support workers. I have a well refined process or each step in my morning routine which requires details that if they are overlooked is the difference between an ordinary day and a disastrous day.

There are a lot of great personal support workers out there. The challenge is that I can only offer 5.5 hours a day. I’m competing against other employers like nursing homes, group homes, etc. that can offer full-time hours, benefits, and a lot of flexibility for time off as they have a full staff of people to cover one another. I employ 2 personal support workers that coordinate time off with one another.

I have a huge need for reliability and dependability for the morning shifts. Being a professional, I cannot miss work unexpectedly or be late as it might be weeks or months before I can get back in Executive’s calendars or make decisions in important meetings.

My day starts at 5am. When I mentioned the details, the margin of error in aligning my shirt, pants, underwear is millimetres. It’s the difference between being comfortable all day & able to use the washroom and pressure sores, being uncomfortable all day, and washroom accidents. Once I leave for work, I’m locked in until I get home…I don’t have the luxury of adjusting clothes myself throughout the day.

I need the trust that someone will show up…on time. If they are late it causes instant anxiety as I am trapped in bed and my wife has to start rearranging her morning to backfill.

A few weeks ago, one of my helpers gave their notice. They had a full-time offer somewhere else. Although they gave two weeks notice, it was a week before I left for vacation. Immediately I had to post a job description on job boards. My best case is that I would have someone selected before vacation and onboard/train them when I returned from vacation. I received 40 resumes, screened them, and conducted phone interviews to decide who I would bring in for a face to face interview. I conducted 28 phone interviews describing the role and emphasizing the need for dependability. One person said, “5am is a little early for me, can I do 9am?”. Unfortunately, my Cerebral Palsy wakes up when I do…so I passed.

The week before vacation I managed to schedule 4 interviews with my wife and me. It’s important to have my wife involved in the selection process as these people will be in our home. None of them showed up. I left for vacation and extended the job posting.

When I returned I screened 45 resumes, 20 phone screens, and scheduled 4 face to face interviews. Only one showed for their interview. Luckily, this candidate had experience working with a professional with a disability.

This week they start and I had to put a schedule together for training. This week I have critical meetings and presentations first thing 3 out of the 5 mornings. Luckily I found 2 consecutive days that I can afford to be late. Training causes me the biggest anxiety in the process. I have to be ‘on’ and sensitive to articulate and explain every detail of showering, dressing , etc. The morning routine will be 50% longer. I will be incredibly vulnerable as I will be naked in front of someone that was a perfect stranger only days ago. I will likely be dropped, fall down, and be pinched.

Vulnerability of being exposed and defenseless

There is a light at the end of the tunnel. After a couple weeks this will be a common routine to the new worker and it will be our new normal. Until they move on to a job with more hours…than it starts all over again.

This is my normal. I’m not complaining as this allows me to go to engage with my passion and work with a lot of incredible individuals. All of the above has made me the leader and change agent that I am today. These skills and experiences has gave me the grit to build great products and organizations.

I am so thankful to all my co-workers and boss who immediately asked what they could do to help me through this difficult time. Their offering of support made me forget about what I was going through for a moment.

I am blessed for my amazing wife. Without her support and love…this would be unbearable.

Now I need to spend some time preparing this week for the job I get paid for. Until next time...