Redefining Disability Challenge – Question 37

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirty-seventh question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

Have recent advancements in medicine or technology had any effect on the way you manage your disability?

This may be a question of semantics, but I have never considered “managing” my disability as something I do in my daily routine. Some medical providers talk about “managing” your diabetes or blood sugar, or “managing” hypertension. Changing technology has made it easier for me to function in a world designed for the nondisabled, but I have never defined that as “managing” my disability.

Because I am a word geek, I did what I often do when I am writing. I opened my dictionary and read definitions of “manage.” According to my trusty Merriam-Webster, manage is a transitive verb meaning “to handle or direct with a degree of skill; to treat with care; to exercise executive, administrative and supervisory direction of; to succeed in accomplishing; to direct the professional career of.”

There are other uses as well. As an intransitive verb, manage means “to direct or carry on business affairs; to achieve one’s purpose.”

I have always said I cannot “manage” a progressive neuromuscular disease. I cannot handle or direct with any degree of skill the manner in which my muscles deteriorate.

But, I do strive to treat myself with care. Certainly, I know I exercise executive, administrative and supervisory direction of my life. I have shown success in accomplishing and directing a professional career for two decades. I most assuredly direct or carry on business affairs. I manage my Personal Assistants (PAs) on a daily basis to achieve my purpose of living what I consider to be a good quality of life in a body which does not always function as I wish it did.

Yes, my progressive neuromuscular disease is going to progress as it will. I have no control over it and cannot manage that part of life.

However, I do my best to live a healthy lifestyle, get adequate sleep, eat nutritious food – all things which in theory should help me function at my best. I use technology to my advantage to be as physically active as possible in my community – an elevating wheelchair, an electric hospital bed, a modified van and more.

There is not an approved drug treatment which will slow the progression of my disability. Physical therapy and stretching may help slow the progression of joint contractures and muscle atrophy, but insurance will not pay for continued “maintenance” treatment which is not “restorative.” There is technology which improves my independence. I communicate with my PAs using text messaging, eliminating the need to wait for a return phone call when I am looking for a back-up to help me get in or out of bed. The emergency response alert system allows me to call for assistance with the touch of a button. Yes, I have one of those “I’ve fallen and I can’t get up” bracelets. I don’t wear it, but it is next to my bed should I need to summon help when I am alone at night.

I wrote about “managing” life as a person with a disability last year for the AbleBodies blog. In that post I wrote how I view managing as merely making choices in life.

All of us, no matter our physical ability, are given the opportunity to make choices. However, as a person who requires assistance from others in order to live independently, there is a critical difference in my choices. The distinction, for me and others who rely on caregivers or assistants for help with care, is we always make choices or consciously think about things most people never consider. The able-bodied have the luxury of a life without these choices, a gift taken for granted; and, unless pressed, would never consider these common happenings real choices or decisions.

We all make choices to help us “manage.” Everyone adapts to the abilities they have and makes life decisions for a variety of reasons. I choose to focus on making choices which maximize my ability to engage in the activities which are most important to me. Whether or not anyone else agrees with these choices, they are my choices. It is how I manage.

Redefining Disability Challenge – Question 30

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirtieth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

Do you see disability as more of an asset or a drawback in your daily life?

Yes. Oh – wait. That wasn’t a yes/no question.

Here’s the dilemma for me in tackling this question. Disability is complex and can’t just be categorized as an asset or drawback. It is both, and to navigate life successfully I have learned when to play off both aspects. Since this question specifically asks about my daily life and not life in general, I will do my best to answer it this way.

There are definitely daily disability perks in my life. The one which is most common in my daily life is parking. In most situations, I can assume there will be accessible parking when I arrive at a public location. Whether or not it complies with code is debatable, but usually there is parking. The parking spaces may be taken by other vehicles, but the spaces exist throughout the communities where I live and work.

My disability requires me to rely on Personal Assistants (PAs) in order to function. I have “staff” to complete many of the tasks and errands nondisabled people complete on a daily basis. There are perks to having staff. I have not had to go grocery shopping in seven years. Two weeks ago I went to the grocery store with my sister Crinnie to get food for the family luncheon which was held after my uncle’s funeral. It was the first time I had been inside a grocery store in two years – the last time I went shopping with Crinnie! What would you do if you didn’t have to waste time and energy on laundry, housekeeping and shopping? I use the time to write.

My disability also gives me an easy out when it comes to heavy lifting or other physical tasks at work. I never have to change the bottle on the office water cooler, because I am not strong enough to lift one. I never have to carry boxes when we move things other than those light enough to be placed on my lap by coworkers. Someone needs to help carry a bin of letters out to the mailbox? Not it!

But, there is another side to disability. My need for PAs requires me to sacrifice spontaneity. My life is scripted because I rely on others to complete tasks nondisabled people just complete without needing to consider the schedule of another or their ability to work. My day is a series of choices most nondisabled people never make. Each day I know the exact time I will get out of bed, eat meals, shower, and go to bed. I know each morning how many times I will use the toilet throughout the day and when. I know because none of these things happen without the help provided by my PAs.

Before I used PAs, I was a much more spontaneous person. I would accept last minute invitations to go out with friends on a Friday after work. I would meet friends at 9:00 PM on a summer night and get home from a night (morning?) of dancing at whatever time I wanted.

I can still go out with my friends, but only when these social events are planned in advance. The last time I was out after 9:00 PM was the April night I went to see a local production of Hamlet with my sister Sandy; and that was only possible because she agreed in advance to follow me home at 11:30 PM to help me go to the bathroom and get to bed. I have already begun to plan for personal assistance at the holidays even though we are only mid-way through September. And just today I learned the PA who works weekday mornings will need to miss at least a week of work because she is having surgery. Anyone available at 6:00 AM to help me get out of bed the last week of September? I’m looking!

I encounter physical barriers from time to time. However, the daily microagressions related to disability are more difficult for me to face with a calm attitude than actual physical obstacles. I wrote about microagressions in this post. These verbal expressions, often said by strangers as a way of opening a conversation or intended as a compliment, usually make me want to retort with a rude comment. Most times I refrain, but the growing list of potential come-backs makes it more difficult to keep that inside voice politely in my head.

Yes – I do “drive” my chair well. Of course I do. It’s how I access the world! Look at you, walking on your own two feet. You manage to do that all day without falling? Wow!

Sigh.

As with all things, there are positive and negative sides to the disability experience. Rather than classify life in such a dichotomy, I prefer to just accept the continued need for advocacy and education. Disability is a natural part of the human experience. Just like everything in life, there will always be things which make it easier to navigate and challenges which must be solved. Striking the balance is what should guide us.

When Personal Needs Are Met

When I started this blog almost a year ago, I knew I would write about disability. I had no idea my posts about my reality would be eye-opening for so many readers. I appreciate those who have told me something I wrote caused them to think differently or observe something with new understanding. Today, I am taking a deep breath and sharing a lengthy post about recent events in my world – explaining why the past few months have been difficult. I tend not to share this part of my reality widely, so this is a big step for me. If you read the entire post and feel a need to comment, please be kind with your words.

My disability requires me to rely on others to help me perform everyday tasks. I use a consumer directed program for home care, rather than rely on an agency to staff my needs. This comes with the responsibility of recruiting, hiring, training, and managing my own staff. It is work, and I know I could give up that work and control to let an agency manage that part of my life for me. But I have yet to find an agency that can guarantee me coverage at the hours I need, for the shifts I require. Everyone I know who uses an agency has moments when they have to phone friends and family for back up assistance because an agency is unable to get staff to their house in a timely manner when someone has called out due to illness or emergency. Plus, I like the control of knowing who is coming into my house and when. How would you feel if a complete stranger walked into your home tomorrow morning to help you get out of bed and into the shower?

I have managed a team of Personal Assistants (PAs) for eight years and usually have 12-14 staff at any given time. Three are out of town PAs who are either in other locations I visit frequently or they only work with me when I travel. Five are my ‘regulars’ who are scheduled for various shifts throughout the week. The rest are back-ups, who get called upon to cover illness, vacations or instances when my regular PAs need time off. These dedicated and caring women make my active life possible.

Occasionally, I need to call upon my friends and family to help me manage gaps when a PA calls out sick or I can’t find a back up PA from my list of staff. Most of my friends who use home care dislike having to do this, even though we are eternally grateful for those in our circles of support who help us when we are in need. But none of us like being a burden. And even though my sisters and friends never make me feel as if I am a burden on them, I hate having to disrupt their busy lives so I can go pee. Or shower. Or get into bed. Or eat. Or get my laundry done. Or anything!

I have staff for that! I have used that explanation for years when people ask me how I “cope.”

Except – for most of the past three months, I have not had staff.

Since I returned from Australia at the end of March, my personal care schedule has taken a beating for many reasons. One Personal Assistant (PA) had to take early maternity leave due to complications with her pregnancy (she’s fine, and her new baby boy is also fine). Another had to have foot surgery. One PA had to take personal leave because of the unexpected death of her son. Another one moved. My primary weekend PA got a better paying job and gave her notice. My team was falling apart.

I started recruiting new staff back in mid-April, and began interviewing candidates in early May. I hired two women I thought would be good. I fired one when she called out on multiple occasions within a few hours of her shift. Then the other quit just as I was starting to feel comfortable with her.

I continued recruiting and interviewing, praying some good candidates would come my way before my friends and sisters became sick of me calling to ask for help. I did my best to maintain my regular schedule, thankful for an employer who understood my situation and granted me flexibility. I ran away to my sister Caroline’s house a few times because it was easier than trying to find coverage for holiday weekends. I had a wheelchair emergency. I used a glass of wine more nights than I should have to take the edge off my frustrations.

My regular staff (those still working) were patient, taking on as many extra shifts as they could given their other commitments. Thank goodness for Tina, who made sure I got out of bed every morning for work. I have always said the right morning PA makes all the difference in the world and Tina has been a blessing in my world for the past two years. No matter what happened the past three months, I never had to worry about whether or not I would be getting out of bed on a weekday morning. Unless you have had that particular stress in your life, I don’t know if I can adequately explain what it is like to wake up and not know how you will get to a toilet, much less get dressed and out the door. Sally came running whenever I called, even in the middle of her own family crisis. Sarah and Ronda filled in whenever they could as well, despite sometimes having health issues of their own.

People use the phrase “it takes a village” in relation to raising a child, meaning a communal effort is required. The same might be applied to my life. It takes a team of paid staff, caring friends and family, and kind neighbors to maintain my independent lifestyle in the community where I belong. Without the “village” I have curated over the years, I would not be able to function as I do.

How do I know this? I know this because when I did not have a complete team of PAs, this is what life looked like:

  • I did not socialize with friends in person. During the week, I went to work and then came home. I didn’t go out with friends. I tried not to schedule anything after 6:00 PM. I didn’t always know how or when I would be going to the bathroom and going to bed, so I had to be available whenever I could find someone to help me rather than at the time of my choosing. I am an extrovert and recharge by spending time with others. It has been a long four months, especially dealing with the blues after returning home from Australia and finding my apartment a mess.
  • I did not cook as much during the week, because I did not always have people to help me make dinner. So, I ate more prepackaged meals and frequented more restaurants. This is more expensive than cooking yourself, and not as healthy.
  • I did clean out my freezer! How long has that container of chili been in the freezer? I don’t know – but I’m hungry and I can put it in the microwave without assistance. Dinner!
  • I wore clothes from the back of my closet some days because laundry wasn’t done. Sometimes I found someone who was available to help me go to the bathroom but they couldn’t stay long enough to help me do laundry. I know the reason I am hesitant to get rid of clothing is because I remember the days (back when I was still able to do my own laundry) when it was easier to just go buy a new skirt and underwear rather than expend the energy to do laundry. Even though I’ve weeded out my clothes three times within the past year, I can still go for almost three weeks without needing to do laundry, never repeat an outfit, and still have clean underwear. Old habits die hard.
  • I did not volunteer or complete service projects with my Rotary Club. The Rotary motto is “Service Above Self” which is difficult, almost impossible, to put into practice when you are focused on keeping your “Self” functioning.

Maslow’s theory of the hierarchy of needs proposes if our basic needs for survival, such as physiological and safety needs, are not met, humans cannot reach self-actualization. While struggling to ensure coverage for my basic needs, I was content just maintaining employment so I could keep a roof over my head. Forget about self-actualization! Finding fulfillment and achieving my purpose (whatever that may be) were not even considerations. I was happy just to show up.

I am excited to report I have hired new PAs and for the first time in months, I have a complete team and feel as if I am back to living my life again – the way I want to live it, when I want to live it, how I want to live it. I have time to focus on goals and future projects. I am writing more and my writing is less negative. I even manage to crochet more days than not. I’m still not consistent on 15 minutes of crochet per day as I pledged, but I am getting better.

To everyone who listened to me whine and complain for months about the difficulty finding good staff, thank you for letting me vent. Friends and family who helped – your assistance quite literally made it possible for me to make it through the weeks with my physical health intact. I did not get sick, or develop injuries or skin breakdowns.

Home care is a basic need, just like shelter and food. Those who work as PAs or home health staff deserve credit for the crucial tasks they perform. I wish I could compensate my staff with higher wages, but because I rely on a publicly funded program (Medicaid) I have very little control over their salary. So, I continue to join others who educate legislators and advocate for increased reimbursement rates.

Sharing my experiences with others has made me realize the value in continuing to write about them on my blog.  I am not the only one reliant on these services. As long as I have a voice, and a platform (modest though it may be), I will continue to use it to inform others. If you live long enough, you or someone you know will need these services too. And you will be glad to have an ally who is not so afraid to tell it like it is.

Redefining Disability Challenge – Question 15

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the fifteenth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge.

Here is this week’s question:

What are the biggest challenges that you face in regard to disability?

One of the biggest challenges I face related to my disability is currently wreaking havoc on my personal life. So I thought I’d use today’s challenge to allow myself to rant about the difficulties involved with finding, and keeping, good staff.

I live independently in the community, in my own apartment, because I have access to home health care. I use Consumer Directed Personal Assistance (CDPA) which means I am responsible for recruiting, hiring, training, managing/supervising and (if necessary) terminating my Personal Assistant (PA) staff. Or, as I often say as part of my “paid schtick” while working, I am the CEO of me and I get to handle personnel.

CDPA is an alternative to the medical model of home care. Rather than a nursing agency sending staff to my house, I have control of who enters my house, what tasks they perform, when they work, and how the job is done. Without access to CDPA and the PAs who work for me, I would have no choice but to live in an institutional setting or rely on the regulations imposed by a nursing agency.

Instead, I manage a staff of six primary PAs and six back-up PAs. These women provide the forty nine hours of assistance I require each week to maintain my active schedule.

In essence, I work two full time jobs. There’s the paid gig I referred to before – forty hours per week for the non-profit organization that employs me. Then there are the forty nine hours per week I spend being the CEO of me.

Only for the past month I have spent at least ten additional hours each week recruiting, interviewing and training new PA staff. For many reasons (maternity leave, injury, family illness and death to name a few) my PA staff are dropping like flies. Right now, I only have five of my twelve local PA staff available to work.

I am extremely short staffed for my life, which means I am living in a constant state of high stress. Because being short staffed means:

  • I don’t know who will help me go to the bathroom after I get out of work tonight.
  • I don’t know who will help me go to bed tonight or tomorrow night.
  • I don’t know who will do my laundry and I only have two more pairs of clean underwear.
  • I don’t know if I will be able to cook the chicken in my refrigerator before it goes bad since I don’t know who is working for the next two nights.
  • I don’t know how I will get out of bed if my one remaining weekday morning PA has an accident or illness because my back-up morning PA is out with an injury.
  • I can’t even think about the weekend because I have to get through the work week.

OK, so I may be acting a bit dramatic. I have friends and family. Someone will come to help me go to the bathroom and someone will help me go to bed. I always find “someone.”

But the point is, right now, I don’t know who those “someones” will be. And it will take many “someones” so I don’t burn out the goodwill of the friends and family I have been calling on for the past month. And not knowing means I have to take time out of my life to plan. Which means I am not as attentive or productive at work, and I am not available for the volunteer service I enjoy. It also means every little annoyance bothers me ten times more than it would – like just last night when I cried because the new PA who has worked for me for two weeks was a no call, no show, and I just didn’t have the energy to find assistance at the last minute once again.

I could keep writing, but I need to go conduct phone interviews with two more potential PAs. With any luck, they will be available for some of the shifts I have open.

And I need to go find someone who will help me pee and go to bed tonight.

In the meantime, I’m hiring – if anyone has any good candidates to send my way…..

 

 

Six Days!

So, I leave for Australia in six days. SIX DAYS!!! Six days from the time this posts (about 10:15 AM EST Sunday) I will be on a plane somewhere over the Pacific Ocean.

I have been planning and talking about this trip since last June. I reserved a wheelchair accessible van – one of the only wheelchair accessible vans available to rent on the island of Tasmania – in August. I found a travel companion in October – thanks again Kelly! I created a crowdfunding site for fundraising in November. Thanks to generous support from friends, family and strangers, I finished my fundraising in December. I booked our flights and secured entry visas for Kelly and I in January. I started making lists in February – things to pack; tasks to complete before leaving; emergency contact instructions – you should see my lists! If I just get through this week….

My Personal Assistants have been very helpful, but the number available to work keeps dwindling. One is out on medical leave, recovering from surgery. Another was taken out of work by her doctor because of complications in her pregnancy. One had a car accident on Thursday and is without a vehicle for the near future. I had to terminate another one last week because she had not responded to my multiple attempts to communicate for ten days. I have no time to recruit or hire new staff right now. It will have to wait until I come back. I’ll be hiring in April, so if anyone knows of a potential applicant in my area, please send them my way. No experience necessary. Fringe benefits include cookies and the occasional opportunity to travel.

My suitcase for the trip is packed, and there is plenty of room for me to stash some Vegemite and real Cadbury for the return trip home. If you live in the United States and you’ve never had real Cadbury (as in, Cadbury made anywhere else but here) you’re missing out. I lived on Cadbury Twirls, Dairy Milk and Flake during my exchange year. I toured the Cadbury factory near Hobart four times during my stay. Each day at school, we would run up to the canteen on our break and stock up on chocolate bars for later. My friend Ulla and I would collect everyone’s money, then she would push my wheelchair to and from the canteen so I could carry everyone’s purchases. One day a concerned guidance counselor pulled me aside to ask if I was eating, whispering “You know, anorexia is very common in exchange students.” I had never heard that rumor. All the exchange students I knew, myself included, were packing on the pounds. Apparently, she had never seen me coming back from the canteen with a lap full of Cadbury bars. The Qantas weight limit is 50 pounds per bag. At this point, I can safely bring about 10 pounds of chocolate home if I wish and not have to pay extra in baggage fees.

My iPod is loaded with audiobooks. I have a new photo card for my camera. I have address labels printed for all the postcards I need to send. This week I will pick up the gift I am bringing to my host parents, who are letting Kelly and I live with them while we are in Tasmania. Today I am doing the final edit of the slides for my presentation – it’s why I’m going so I do have to make that a priority.

My cousin Jim recently compared vacation preparation and excitement to the anticipation of Christmas. If that is the case, I am getting close to Christmas Eve levels of excitement. Six days, in case you forgot!