I CAN afford to BE disABLED!

T’was the day before Thanksgiving…Perhaps a day to prepare for all the festivities: Making the last trip to the grocery store, cleaning the house for guests, planning recreational activities for the long weekend…But I was preparing for something totally different.

I had a scheduled surgery that morning. I ran a few errands in preparation for the surgery, drove back home to park my car since I wouldn’t be able to drive after the procedure. I then requested an Uber ride to the hospital.

All the people I talked to who either had this surgery or knew someone who had it, had wonderful things to say about the procedure… “You’ll be so glad you had it …You won’t have to deal with all this pain anymore… You’ll feel like a new person”. I looked forward to the procedure. It promised a new beginning. A new beginning, I had. Just not exactly the one I expected.

My scheduled procedure went well, just as expected. Once in the recovery room, I started complaining of excruciating headaches that felt very different than my regular migraines. I was taken to the observation room and given pain medication, but the headache persisted.

Then a couple hours after the procedure, I was eating a Popsicle and tried to tell a family member that my head was feeling weird, but no words were coming out. My lips were moving but no words were coming out. I could see the worried look on everyone’s faces and knew something was wrong. Within a few minutes, my room was full of people. I suppose they all came to help. Rapid response was called.

By the time the medical staff were in the room, the symptoms had progressed. I couldn’t answer questions like “who’s the president of the United States?” I knew the answer but couldn’t get the words out. I couldn’t move the left side of my body. The left side of my face was numb. My left eye was drooping. I was presenting all the typical signs of a stroke.

I was then rushed to a different hospital by helicopter. The initial plan was to remove the blood clot as soon as possible; we all assumed that I had a blood clot from the surgery. Once in the new hospital, the CT scan and MRI could not find any blood clot, yet I still had all the stroke symptoms. I was put on stroke protocol and treated as such.

I was in that hospital for a week, three days were spent in the Intensive Care Unit. My entire body was out of order during that time. I had developed medical problems I didn’t have before. My entire being had changed, internally and externally.

While the changes were debilitating, I was not ashamed of them, but I slowly became aware of other people’s discomfort with my “new disabilities”. One person who had known me my entire life said, “you can’t afford to be a disabled woman with three kids” and by that comment I was reminded of society’s view of disability.

Ten years ago, I was legally declared “disabled” due to debilitating medical conditions. Those conditions were however invisible and apparently did not bother anyone. I have worked since, I have been a mom, a business owner, and so many other things while living with the same challenging conditions.

Somehow, as long as they were invisible, nobody cared. There were my problems, not society’s. I spent some days in bed, some days I had to call for help, other days I canceled work assignments and prior commitments. Somehow, nobody ever told me I couldn’t afford to be a “disabled woman with three kids”.

This time my disability is visible, and it seems to bother people more than it bothers me. I’m in a wheelchair. I’m having difficulty communicating. I can’t take care of my personal care needs. It’s obvious that I’m not “independent” according to society’s standards.

Does society view people with visible disability as a burden? Now that they can see my limitations, is it a constant reminder  to them of their lack of support? Perhaps my invisible disabilities made me look “normal” for ten years and now all the sudden I’m no longer “normal”? Sadly, the answer to all these questions is a loud “YES” and I have read many research papers on this topic during my post-graduate studies, but I will not bore you with that.

If my visible disabilities do not bother me, does that mean that I will not apply myself to regain the functions I’ve lost? Not at all! I’m doing physical, occupational, speech, and vision therapies and I have already seen major improvements. What I’m trying to say is that I do not fear limitations. Even if I do not regain all the functional abilities I had before the stroke, I believe and KNOW that with support and accommodations, I can still have a meaningful life. Maybe my life will be even more meaningful than it’s ever been because I now have a deeper sense of gratitude, appreciation, and empathy.

I will not apologize for having disabilities, visible or invisible. I’m a beautiful human being inside and out. What you see or do not see does not define who I truly am. Get to know me and other people that society calls “disabled”, then you will realize that we are all able and disabled in our unique ways. Every human being has both strengths and weaknesses.

Now, look at the title of this article again, but only read the words in capital letters. You should read I CAN BE ABLED. Yes, people can be "abled" by the respect they receive from society and that respect starts by assuming that they can have meaningful lives.
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If we assume that people can have meaningful lives, regardless of their functional limitations, then we start supporting people in achieving lives of purpose, and therefore, there will be no room for statements like “you can’t afford to be a disabled woman with three children”. In fact, I will joyfully be a "disabled" mother of three "disabled" children because our family has embraced disability as part of our human experience. It’s time the rest of society gets with the program!
 
 
 Chou Hallegra
Self-Advocate & Ally to the differently ABLE
Founder of Grace & Hope Consulting, LLC
 
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P.S. Hallegra is my middle name. It comes from the Italian “allegria”, which translates into “allegresse” in French or “glee” in English. Therefore, Hallegra means lively joy or gaiety, which I want to identify with even more in this season of my life.