The need to look disabled: MS and Handicap placards
Disability and exploration: Who cares what they think.....right? Not so easy.
Why we have to feel the need to "look" disabled when using the placard is not yet understood by me or Tammy. But for some reason we feel people are watching and judging us. We want to experience this beautiful country while we are able both physically and mentally. While we are mobile enough to still do it.
As most of you know, we sold almost everything we owned to live a life of adventure and exploration at 41. After Tammy's diagnosis of Multiple Sclerosis we realized that time may not be on our side. Our lives were both upended from MS. Everything we were chasing vanished and Tammy's health became our focal point. With outdoor adventure and Multiple Sclerosis comes restrictions. Sometimes we encounter obstacles too big and will have to rearrange our plans. These obstacles can be overcome with thoughtful A.D.A. design in mind. Sometimes it's downright impossible and we need to understand that too.
Preplan is the best plan:
Nowadays we check out the website beforehand to see how many stairs will be in the path of our next ambitious adventure. Luckily, most national parks have been great about this. I think it's part of their design on purpose to not exclude anyone. We take advantage of accessible tours whenever we get the chance. In Tammy's case, her energy runs out without notice. To enter the cave by stairs (180 steps down) would be fine, It's the leaving the cave that would really hurt her. Sure, she can muscle through it and make it slowly. She can push her limits and be strong by trying to hide the pain. All that does is cause more pain. It will either mean she's leaving early, sitting out for certain tasks later in the day, and most likely having a hard time functioning the rest of the day from extreme fatigue. Then tomorrow comes and she'll have to deal with the pain of forcing her muscles to work more than normal. The spasticity, the throbbing, and the pins and needles all come into play after a hearty workout. Even more so if it's not a planned workout, but a one time experience. It's physically painful and Tammy is usually laying low for the next day and a half. Having the elevator access is the difference between enjoying a visit or regretting it.
It would be nice to see more cities enforce their laws but sometimes it's a money thing. You really can't force a small store on a corner to add an A.D.A. ramp. It's just not possible sometimes and we need to recognize that too. Don't assume they don't like you, it may be deeper than that. They are there to run a business and turning anyone away is bad for business. It may be they are financially or physically unable to accommodate. Sometimes there is an effort to make a location accessible but with no code enforcement in small towns it may be "not up to par". There may be a railing missing, or a 1" step instead of the standard 1/2". We should still be grateful they made an attempt to help us and they considered our restrictions.
There are other times when a commercial space is supposed to include accessibility in their design and do. That does not mean it has to be convenient for you. It may be around the building or across the whole place. It may also be behind a locked door where you need to find someone to unlock it for you. I'm happy they are available, and most times I find they are cleaner than the regular restrooms with plenty of room to turn all the way around in a wheelchair. Tammy doesn't personally need one but we always look from that angle. Be humble right, there is always someone in a worse situation than yours. I'm pretty sure it's a 5 ft diameter that is required. Just don't assume it has to be easy or convenient. That only leads to disappointment and resentment. We're grateful for the attempt and feel recognized as a human.
Let's take for example in the parking lot, we feel judgment when strangers see two people hop out of a pickup. two forty somethings with a little pep in their step. Especially when they see me (Frankie). I never use it alone, but when I get out of the drivers seat I get that look. We both get the looks, an occasional remark....Whatever. Another instance was at the Mammoth Cave accessibility tour. Our group was mostly older people with visible mobility issues. Not that it merits anymore care or special attention because it's visible. But, when we come walking up seemingly normal, we get the stank eye. The groups were small and limited in availability. We booked a week in advance and still we're last in line with the only remaining two tickets. I'm sure some folks try to nab a space on any tour because they didn't plan ahead, but it seemed like everyone all had legit cases for our group.
We were able to drive directly to the elevator, though there is a short walk to the actual lift. We took turns using the elevator for covid-19 reasons. Everyone was masked up and staying apart. Once down there, it's all about walking. The ranger took it slow as she explained what we were seeing. There are seats and bathrooms on the tour. As well as a paved path that wheelchairs and scooters can easily traverse. We took many breaks to talk about things in the the cave. It was about a half mile of walking in. We then turned back.
Maybe the accessibility tour is limited for safety purposes, or limited terrain access. We unfortunately missed the huge 6 acre cavern, and the little Niagara deposit. I asked if I can take the stairs myself, but was denied and needed to use the elevator like everyone else. Apparently people get lost down there, sometimes for a few days. So, the elevator it is, my second choice.
During the trek back Tammy started having a little trouble with her gait. She was tired from all the new experiences and walking combined. It's overwhelming for the nervous system, especially one with Multiple Sclerosis. By the time we got back to surface she was depending on her walking stick a lot more. We were grateful the truck was about 20 steps away and she can sit down for real . While she slept on the way home I thought of how accessibility is important and necessary for all walks of life. How it can make it break someone's plans. I thought how this trip would be impossible if not for A.D.A. laws.
This applies to many activities as well, not only cave exploration.... You need to approach them from a different angle. Pre-plan what to do, and how it can be done. I like to plan an escape route just in case things turn south. If Tammy is in pain, how can we continue? We plan in sitting breaks and food stops all the time. Not only does it give me a break, but it also lets her unwind a little. Giving her mind and muscles a chance to recoup.
To recap, Tammy feels that because people can't see you actually limping, they assume you're fine. If you're not reaching for a wheelchair or cane you must be able to function normally. Some people think you can get the placard just to be lazy. I have to admit, before any of this mess started, I looked too. I probably passed judgment in silence. It's true, that did happen. I (admittingly) was also ignorant and had no clue what life was about back then. I can't be mad at someone for not understanding. I wasn't taught as a child, maybe it's the same for them. I brush it off as we all have trouble at some point in life. For me, it was my wife's illness that rattled my world. For them, that's their story to tell.
Staying active is important for your mental and physical health. Multiple Sclerosis has a way of slowly isolating you and keeping you indoors and inactive. You have to do you best to try to get as much active time you can possible endure. Even if you can only go out on the porch and raise your arms up. Take a deep breath, hold it in for a few seconds and exhale slowly.
Fresh air is good for us all....
Article by: Frankie Tea of TeamMSRV
Frankie and Tammy Tea live life to the fullest out of their fifth wheel camper. After Tammy was Diagnosed with RRMS life took a dramatic turn. We decided that we want to lead a life of service and adventure. We sold most of our belongings and now live full time on the road teaching people how to deal with Multiple Sclerosis symptoms and mental attitude for a better quality of life.
Visit our Website: www.TeamMSRV.com