Let’s Talk About Independence…and Assistance
Our wheelin’ sister, friend, and web designer Alicia Reagan wrote this excellent blog on the subject of assistance and attendant care and how it affects one’s independence. We wanted to share it because it really hits home in a personal way for anyone that lives with a disability.
Let’s Talk About Independence…and Assistance
Recently, a conversation was had in a disability Facebook group, about the trade off between receiving personal care assistance vs. losing personal independence. Specifically, “if you choose to get personal care to help you, when you can actually do it yourself (even if it takes you an inordinate amount of time and energy) – is it worth losing your own independence of doing it yourself? It was a respectful conversation with various thoughts from the commenters. One thing that resonated with me in that conversation was how perspective and understanding are needed even within the disability community.
They say a spinal cord injury is like a snowflake, because no two are alike. And that is so true! Maybe you could even say like fingerprints – custom and unique to each individual. We all know this academically, but I believe that thread revealed how limited we are within our own perceptions of what we personally experience.
In light of that conversation, my heart to keep learning and educate, and, of course, my own evolving life experiences…we will talk about this!
I have written before (here) about attendant care, but the purpose of this post is to have a learning conversation about attendant care vs. losing independence.
To start, let’s just answer some foundational questions:
Who Are Attendants?
For definition clarity, an attendant in this post is anyone who helps you attend to any needs throughout your day.
What Are Areas I May Need Someone To Help Attend Me?
Bathrooming (either bladder or bowel care).
Body positioning in chair or bed
Reaching items/random needs out of reach or ability all day long
I am sure others could add to this list, but I just want you to get a proper big picture view of each of these categories and how each of them is affected by a spinal cord injury. How much you are affected brings us back to that snowflake/fingerprint analogy, but each of us are affected in most of these areas.
Why Am I Even Thinking About Attendant Care?
I cannot speak for everyone, but I guess it is helpful to assume that attendant care conversations start due to insufficient independence. For example, I didn’t learn about spinal cord injuries until AFTER I had one…not before. I didn’t need a wheelchair until I couldn’t move. I didn’t need bladder and bowel routines until I didn’t have control of that anymore. I didn’t need hand controls to drive my car until I couldn’t use my legs. Follow my thinking? If I can handle everything perfectly, I don’t think we would even be having this conversation.
For the sake of education, I would like to challenge those of us within the spinal cord injury community to remember the vast differences between us and remember that what we all have in common is a spinal cord injury, and that is where it branches out from there.
In light of assistance and spinal cord injuries, I want to make a few observations:
A quad is not a quad, and a para is not a para.
It is not enough to try to compare quads and paras. I know paras who need daily care (for reasons mentioned in a moment), and quads who don’t. I know quads who are very limited and have their care down to only needing one thing, and quads who can walk but have zero arm function and must have daily care – even to be fed. There are SO many differences among us. Simply because my neighbor is a female like I am, doesn’t mean we have the same hobbies, personality, tastes and preferences. We are TOTALLY different, even though we are both females. I believe you follow me.
Other issues may be involved.
“I am a quad or para, and I am independent, therefore, I know you are capable of that, and you can and should too.”
That is an attitude that can be felt, even if the words aren’t spoken. It can be felt when someone can drive and someone else can’t. It can be felt when someone can transfer like crazy and someone else can’t. It can be felt when someone chooses a power chair over a manual chair. It can be felt when someone can handle all personal care and someone else cannot. It is my hope that we can address this topic with an open-minded perspective that someone else’s needs don’t have to match ours.
There are other issues that play a HUGE role in needing extra assistance:
Other injuries (a bad shoulder can stop you in your tracks!)
Various strengths/weaknesses among us – especially in incomplete injuries where some nerves get juice and others don’t
Spascticity/ Spasms stronger than you are
Other health problems (diabetes, heart, arthritis, etc.)
Not having a family/support system regularly that can help when needed
Extreme fatigue/energy levels that deplete quickly
Unless you know every detail of someone’s life, there is no way to know the circumstances of those who need daily assistance.
Before I took the time to write this, I did a little research among my friends. I asked 4-5 of them, who have various levels of injury (both paras and quads), and assistance needs, the details of their level of injury and what assistance they needed daily. Every one of them needs something from someone else throughout the day. Maybe it is only the bowel program, maybe they don’t drive yet and need to be driven somewhere, maybe it is a full daily 24 hour routine, or maybe it is simply getting something from upper cabinets or shopping assistance, but they all needed something in their day.
Independence is all in how you personally define it. Maybe it is important to someone to do every thing they can for themselves, no matter how tough, challenging or depleting it is. For someone else, it may not be worth the trade-off to do everything, but then be held captive to a spasming, pain-wracked body so totally depleted of energy that you cannot function the rest of the day. And for others, they may have every desire to do something alone, but they are physically incapable of doing anything in any way. Needing energy to invest in things that also help your mental and emotional health is also a huge component for many who would rather get the physical out-of-the-way, so they can invest their lives in what they enjoy.
I can’t speak for anyone else, but for me, assistance is so much more freeing. My pain and spasms make almost every thing I do extremely difficult, and that does not “increase” my independence. It makes me a prisoner in my own body. To have someone alongside me to help with the “daily” is extremely liberating, because it allows me to enjoy more things that give me purpose.
Defining personal independence is just that. It is personal. To run your own life, the healthiest way for you, and frankly, not allow others opinions to sway what is best for you, is the greatest independence you will have.
Let’s live our best and give others the space to do the same!
To learn more about Alicia or read her blog, "This Enabled Life" click here.
It’s all good, so keep on rollin,’
Roberta, RN and Patty, BSN, RNC
The ROLLIN’ RNs ™