Most assistive services do not have a clear and streamlined system of enrollment. Additionally associated providers mix you into the rest of the population until you tell them otherwise. The system is littered with nuances and subtleties that are generally not explained. Things such as how to obtain access to books, available supports, accessing supports, using key words and specific language. It is all quite difficult to navigate.
On three separate occasions I have had to ask for help regarding the next right step. My case manager has helped so much in pointing me in the right direction. Sadly without that direction I would be lost.
Prior to injury I believed that telling a client what they needed to do next should provide them with the necessary information to move forward. I am finding that this simply is not true.
Not only do I now require verbal communication, I need written follow-up. After I am able to understand what is being asked I have to process through my anxiety and allow for time when I am not physically fatigued.
I was unable to plan for time this week and this blog finds me sitting, waiting in a loud and open office area, for someone to call my name.
"Can you let them know I have trouble hearing?"
No problem. Before coming down to the office to understand a concept I would formally have thought nothing about, I sent three emails, placed phone calls, and emailed my support team asking for help.
Unfortunately I am the only one that can sort out what is going on.
When did help become riddled with barriers? Why is it so difficult for others to understand that my limits are not for my comfort, they are necessary. How can I help people to understand that what may be normal or easy for someone else to grasp is beyond my ability to comprehend. Right now, it is asking everything to follow along with what I know I need to do, determining when there is more is beyond me.
The hum of the ventilation system is buzzing in my ears and my scar has already begun to throb. My eyes want to close from the lights despite using my filtered lenses. I have at least another hour to go. I doubt I will be able to accomplish anything more today- I may even just go home to bed. (To help you understand, it is 2:30 in the afternoon.)
Many in my recovery team have gone above and beyond traditional care for those with disabilities. I can't imagine trying to cope with all of this without a good support system. I find myself continually surprised and how this tumor and surgery have affected my functioning. Things that I never thought of or even noticed prior to surgery are devastating. How do people do this without a team in place to support them?
While I do have some of the best supports possible, I am still surprised at the lack of understanding or even empathy that enables people to look past you. If you have ever had the thought that you have done enough or helped more than normal, please take the time to think about this person as an individual. We do not fit into a mold and it can be helpful if you ask for ways to make things easier so that we can participate more fully in life.
Those with disabilities offer a necessary and valuable insight into the world around us. Maybe its time to stop using a "one size fits all" mentality and really take the time to see one another. What changes might you see in your community if you took the time to see everyone as they are, rather than fitting them into a mold? Keep in mind, we are all individuals with valuable insight and contributions. As soon as we try to make it easy on ourselves by thinking that maybe one size fits all is the way to go, think of all that you will miss out on when you stop seeing others for who they are.
(Hey, there goes my double vision. This could be fun.)
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