Photo courtesy of Our Lives
Do you wonder why some days are more tiring than others or some activities take more out of you than expected? The reality is that it takes more mental and emotional energy to move through our days as people with vision loss than it does for our sighted family members, friends and colleagues. This experience is often referred to as cognitive or mental load.
Even as someone who has been legally blind my entire life; has excellent white cane navigation skills; feels very comfortable using access technologies; has well-tuned, adapted daily living skills for cooking and maintaining my household; enjoys several hobbies and participates in community life, there are times my “batteries are drained” and I need to recover my energy. This is because I am constantly navigating a world that was not built with blind and low vision people in mind. Everything is designed assuming that people can see, and the rest of us must figure out how to navigate it.
A lot of mental energy goes towards problem-solving various situations throughout the day. Even something as seemingly simple as plugging in an electrical cord may require a strategy or take several attempts. I find myself creating workarounds to get things done, since the “sighted way” of doing things isn’t working for me, like reading instructions on packaged food. I might start out with a magnifier and then move to an app on my phone or ask someone to read it to me. This problem-solving takes time, patience and persistence.
Another draw on our mental batteries is the level of planning needed for activities, especially when they are new or unpredictable. We need to prepare for various scenarios with our plans A, B and C at the ready if we hit barriers. This is particularly true when we are traveling from place to place—work, appointments and community activities. We need to investigate our travel options, noting that in some communities there are very few of them. We need a back-up plan in case a cancellation or delay. We may have to put our trust in a driver we don’t know, and we need to find our way in buildings or streets with signage and landmarks that aren’t accessible to us. We need various tools at the ready if we get stuck and have enough mastery of these tools to use them in stressful situations.
Another part of the mental load we carry is being hypervigilant to protect our safety and well-being. When I’m in the kitchen cutting food with a sharp knife or using the stove, or when I’m descending a flight of stairs or crossing at a busy intersection, I need to be acutely aware of my surroundings and planful with every move. I might need to stop conversing with someone or reduce any other distractions to stay focused on the situation and protect my safety.
Lastly, a big piece of the cognitive load is managing all the feelings that go with explaining what’s happening for us to others, navigating the problem-solving, planning and hypervigilance. We’re managing the feelings we have about the task along with the tasks themselves.
So, how do we deal with this heavy cognitive load? For me, it’s important to confirm that its real. That it isn’t a personal flaw. That I’m not being lazy when I don’t have the energy to do more in a given day. That I’m not being overly dramatic or weak. I understand it as part of the workload of vision loss.
I develop routines that give me a sense of ease, putting objects in predictable and easy to remember places, keeping an order of operations so that I don’t have to expend extra mental energy. And I recognize when I need to rest and recover.
I also keep my vision rehabilitation skills finely honed, acknowledging when I need to learn something new, revisit an existing skill, or add a new tool. I can’t imagine my life without orientation and mobility, access technology and adaptive living skills that I have and use daily. Knowing I have reliable tools and skills reduces my worry, frustration and that overall mental load. If you’ve been thinking about reaching out to make a vision services appointment, I want to strongly encourage you to get in touch with the Council’s Vision Services team or the State of Wisconsin’s Office for the Blind & Visually Impaired. Learning and practicing these skills can truly be life-changing.
My involvement in education and advocacy both in my role here at the Council and in my volunteer and personal time is another way that I strive to lessen my mental load. If I can play a role in removing barriers and helping build communities that are accessible to everyone, I benefit personally by knowing I’m paying it forward to help others reduce their load just a bit. This is why the Council’s work in advocacy and community education are so incredibly important to our mission of promoting the dignity and empowerment of people who are blind and have low vision. If websites are more accessible, if there is more access to transportation, safe pedestrian spaces, and if there are fewer barriers to taking part in civic and community life, then the load is lightened and there’s more energy to take part in the world around us at whatever level we choose.