A decade ago I secured my first handicapped-accessible apartment. It was, for transparency reasons, a one-bedroom in elderly and disabled public housing. My 6-year-old son, Winston (my black lab. service dog) and I lived in about 600 sq. ft, but it was our first apartment. In addition to being our first apartment of any kind, it had the first bathroom with grab bars I had ever had.
My disease (FA) has progressed to the point that at least one grab bar is necessary, at minimum, for me to use a toilet. On the best of days, when all the stars aline, I am able to pull myself up using this grab bar, let go with one hand, and coax my pants down while pivoting and lowering myself, still holding on, till I am seated on the toilet. I know, right? … and for my next trick……… Not to mention that this is if I even successfully make it, which is about 90% of the time. Do not worry I will not go into detail about that 10%. It is enough to say it is not pretty.
There are, in 2019, still quite a few places I go or would like to go that do not have grab bars in their bathrooms. The number one place on that list is private residences. I am (or at least used to be) a fairly social person, but not being able to pee all evening when you’re at your friend’s house for wine and cheese somehow does not sound fun or relaxing to me. My wheelchair fitting and being able to close the door is a luxury I have learned to just live without!
I guess you could say in a perfect world my ideal bathroom would have two grab bars one placed horizontal and one perpendicular at the end of horizontal bar, running vertically. (see picture) In addition to that, my wheelchair and a PCA would fit, allowing enough room for me to move in and close the door. My PCA could then pull down my pants, so I could hold on with 2 hands. Then the PCA could help guide my hips as I sat on the toilet. As we all know, this is far from a perfect world. So, instead, I hope for one horizontal grab bar that I can reach safely while pulling my chair as close to the toilet as possible.
The reality is most people I know do not have grab bars in their bathrooms at home. Believe it or not, some pubic places do not as well. So instead in order to visit my friends in their homes, or go to one of these places, I have to bring 1 of 3 people with me. Now I am limited to these few people because there are a few different requirements a person must meet in order to make this list.
1) The strength to allow me to put my arms around their neck, squat as I sit to pull down my pants.
2) I have to be comfortable enough with them to be able to go to the bathroom in their presence.
3) Desire them to be part of the visit!
4) They have the time in their own lives, for me to live mine.
- So as you can imagine my ability to socialize, not in public well-trafficked places, is very limited. I must also mention that I am one of the “lucky ones,” because I have 3 people in my life that quite often make adventures reality for me!
If, the bathroom in a given place is a go, finding it unoccupied is hit or miss. There are 3 typical situations, beyond someone else with a mobility impairment occupying said bathroom.
- Almost always the changing table is located within the handicapped stall. Young families often occupy it for that reason. Being a parent is hard, believe me, I know, but I would not classify it as a disability.
- The people who rationalize their usage by saying to themselves by saying, “I will be so fast, I only have to pee. What are the chances someone will actually need it now?” Boo, I need it!
- The third is one I am sure quite a few people can relate to. Do not even try to tell me this is not true! When people feel the urge to poop, they automatically go right to the handicapped stall. I am not really sure what happens, but whatever it is, it requires more room. I understand the increased privacy, but if I can go with the door open in public. Really? P.S. Flush!!! I already drew the short straw. I can’t walk, have a weak bladder, and now I have to deal with other people’s shit.
In a place where there is an available bathroom with grab bars I, unfortunately, still have to deal with the poor placement of bathroom necessities. If the grab bar is obstructed or too short it is the same as not having one. It is clear to me that when a bathroom was designed by someone without the need for it. Therefore, just ask a person with a mobility issue to test out the plan.
I am so thankful for the implementation of ADA laws and all the people before me that fought for them. I guess I am just questioning when going to the bathroom became a privilege vs a right. I am hoping by bringing to light this topic, maybe just maybe, one person will hesitate and consider them before taking a bathroom for granted.
Remember I miss out on most events, I am not there for, in life due to functionality, not choice!!