I want to write about so many recent events and their impact on my life, like the brutal murder of 19 disabled people in Japan and Jerika Bolen’s desire to end her life, but I don’t have the energy to write anything which can compare to what others have already shared.
I want to celebrate my most recent rehabilitation victory (I transferred out of my driver’s seat into my wheelchair ALL BY MYSELF for the first time since January’s femur fracture this past week – three times!), but I am too busy trying to find Personal Assistant (PA) staff to help me get out of bed in the morning to be excited over this accomplishment.
I want to attend meetings, events and parties, but I do not have PAs available or healthy enough to work the hours I require so I can be an active member of my community this week.
I want to make plans to have fun this weekend, but I will be working on Saturday and Sunday to make up for the work time I have missed this week due to lack of PA staff.
I want to watch some of the Democratic National Convention tonight, but I will have to shower instead because I don’t yet know who is helping me get out of bed tomorrow and if they will have time to help me shower in the morning.
I want to be a more productive employee and deliver the quality my employer has come to expect from me, but meeting my basic needs is requiring time and energy which is normally devoted to work.
I want to travel, but I am forced to put those plans on hold because the only bathroom I can use is in my house.
I want, I want, I want.
But, what do I really need?
I need to remember there are people who are willing to help at a moment’s notice, and who come when called so I can get out of bed (thanks Stacey!).
I need to be grateful for my accessible vehicle, when so many are unable to access their community due to lack of transportation.
I need to share the great pieces written by disabled authors and advocates I respect, so others can learn how ableism threatens disabled people and understand the violence disabled people everywhere face.
I need to thank my employers – current and previous – for recognizing my unique needs and granting me the reasonable accommodations which make it possible for me to remain employed full time for twenty years, unlike 80% of disabled people of working age in the United States.
I need to find patience while telling myself this too shall pass, and do my best not to stress over things beyond my control.
And I need to congratulate myself for completing a goal, and posting a new post in the 38 minutes of free time I had alone today.
Not only that, but now I know who is helping me get out of bed tomorrow. Although I’m still going to shower tonight in case something happens…