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I Need More Than A Parking Space

I Need More Than A Parking Space

While it may not seem it to look at me, I am technically disabled. As much as it pains me to admit it, it’s justified. I think when people hear the word “disabled”, they immediately think of parking spaces. While parking spaces are important, I can still gut out a short walk if I need to (though I will pay dearly for it the next day). There are some other issues though, that I’ve had problems with, where accommodations aren’t present or aren’t easily found. That’s what I want to discuss today, some seemingly smaller problem areas, that can be huge nightmares for me.

Contact issues

I’ve written before how talking on a phone can be extremely rough for me. Between speech and cognitive issues, it’s a disaster waiting to happen. Either the person on the other end won’t understand me, I won’t understand them, or I’ll be unable to explain what I need to properly. Even in 2017, with all the technology we have, there are still so many places that rely on you making a phone call to get help. This has repeatedly been an issue for me, particularly with the United States Postal Service. I frequently have problems with my mail getting delivered (and let’s remember, many of us get medication via the mail these days). Trying to contact them without calling them can be a nightmare. You can submit a case online, which takes forever, but even then, they want you to call them or be able to call you. An online chat feature would be great, even simply being willing to email and email only, would be great. I have had some luck with their Twitter account, but even then, they often want to speak via telephone. It’s an incredibly awful experience for me and I often need my roommate to impersonate me. There are many places with this same issue, even doctor’s offices, and it’s baffling to me. I need tools to help communicate more than I need a better parking space.

Opening/holding objects

Like many with MS, I have trouble with my hands. They are often numb, weakened, or riddled with tremors and spasms. That can make so much of life difficult (and again, looking at me, you’d never know). Trying to open wrappers can be maddening. The level of frustration I get trying to open something as small as a cheese wrapper is immense. While the average person out there would have no issues, so much packaging is incredibly difficult for someone like me. The same issues that make it hard to open something, can make it dangerous and difficult to use scissors or a knife. These symptoms also make holding objects difficult. One of the more fun examples I have is when I get a beer at the local brewery. I know the beer would be better drunk from a glass, but many times, that glass might be a bit heavy for me to hold and constantly pick up. I’ll occasionally ask for a plastic cup, but that can also lead to a bit of embarrassment or I’ll forget to ask.

These opening/holding issues are things that no one really thinks about, especially if they see me. I remember a couple years back, people ridiculed Whole Foods because they started selling unpeeled oranges in a plastic container. They were ridiculed so much for encouraging laziness that they eventually pulled them from shelves. Even my friends and family shared jokes about it. I took one look at it and thought “I wish I still lived near a Whole Foods”. Yes, it was pricier, but for me, something like that would have been so incredibly helpful. I rarely eat oranges and the like because peeling them is too hard for me.

Temperature

I know we constantly talk about how temperature can be such a big deal for us, but I feel it deserves mention here too. It’s not something that people think about when it comes to accommodations for the disabled. Temperature has such a big effect on many with MS, that it deserves to be talked when we are discussing making appropriate accommodations. A cool and consistent temperature can be a must for someone like MS, and many places don’t provide that.

These are just a few areas that I feel need improvement when it comes to making the world more disabled-friendly. There are many more though, and I really would love to hear from others who have noticed similar issues! So please consider leaving a comment if you think of something!

Thanks for reading!
Devin

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Azjackie
    2 years ago

    Devin I don’t think it is so much a cognitive or speech issue for you so much as a poor customer service issue. I talk about poor customer service all the time with my boyfriend, friends, and family. It is maddening and makes you think maybe it is yourself. In my working career over 30 years, I never treated anyone as poorly as people do now. I can’t quite put my finger on the logic but one of my friends who was a 30 year practicing psychiatrist, thinks it is a sense of entitlement and technology. Society has created technology to take over conflicting with a “but you need me” mentality. Sounds logical.

    A couple major things I’ve seen not aiding are. I call them “speedways” in front of stores, pull doors, parking spaces far away from the door, and don’t get me started on USPS. My mail person shoves my mail deep into the back of my mailbox. It wasn’t just me. My Mom who is 4’8″ tall her post office assigned her a box just below the 6′ mark and her mail person puts her mail at the backside of her box. To get her mail she has to ensure it is during business hours, wait in line, and have her mail brought out to her.

  • mgb4ms
    2 years ago

    Having begun a descent into accumulated disabilities after being diagnosed for 30 years, I am increasingly aware of accessibility (or lack of)…Stairs with no railing (building code?), doors to restaurants without opening devices (esp. those where you order and take out coffee, food etc). How about motels/hotels without any accessible rooms, toilets that may as well be a hole in the floor given how low they are! And doors into handicap accessible restrooms that weigh a ton…how does one get inside without falling on your face? It feels like we’ve come so far, but still have a long way to go.

  • Devin Garlit moderator author
    2 years ago

    Thank you mgb4ms! I think most people really can’t comprehend these issues without having them. People can’t understand how the smallest of oversights can makes something that is supposed to be accessible, very far from it. Heavy doors, even at supposedly accessible spots, like a handicap bathroom, are perfect examples of this. Accessible on paper and by design, but not in reality.

  • jensequitur
    2 years ago

    I want to know if it’s just me that has this problem. When I talk on the phone, or sometimes in person, I have this weird other-person problem – I’m hearing myself talk as if it’s somebody else doing the talking. It’s really distracting and can throw me off when I’m trying to remember what it was I was talking about. At first I thought I was going insane (still an option!) but now I’m more used to it, and forge on even tho I’m feeling odd and not quite myself. (Sadly more and more these days.) I’d much rather do things via email than over the phone, because at least I can see what I’m typing and review it to see if my usage is weird.

  • Devin Garlit moderator author
    2 years ago

    Thank you jensequitur! While I don’t have that specific problem (or I do and don’t realize it yet), I avoid the phone like the plague, mostly because of confusion and speech issues, but being distracted is certainly part of that for me. I’m thankful more people are turning to email and texting these days rather than actual phone calls!

  • Julie
    2 years ago

    I’ve been diagnosed for 17 years but up until a year ago I never had problems with my hands. I can feel people looking at me wondering where this is coming from. Everyone was used to all of my other strange symptoms but since a new one popped up they don’t want to have to get used to a new one. Well, I don’t either, but I’m not really given a choice.

    I’ve discovered a new help as to my typing. I’ve been trying to do some writing and was looking for a help on google chrome. I found Grammarly. If I type a word wrong (my hands stutter, for lack of a better word), if my brain doesn’t come up with a better word, it suggests another. It underlines the word and put my cursor over it gives me the correct word or spelling. I’m not sure if this would help anyone with hand problems but it’s been a great help to me.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much Julie! I too struggle with my hands so I will definitely check out Grammarly. I am always looking for any sort of help or edge I can get when it comes to them!

  • LuvMyDog
    2 years ago

    I have the same problem, I don’t “look” disabled. But, 35 years of MS have added up and in “old” age and everything hurts, I have eye problems, depth perception problems, my hands and feet don’t work as well as they used to, cog-fog, speech problems, and it all brings on depression and a really BAD attitude! And, I have gut problems that have gotten much worse over the past year. Pain, pain, pain, accompanied by bouts of mild nausea. Esophageal spasms that feel like a heart attack. Can’t get better than that can you?!! Oh and yes, the temperature problems, those have gotten worse too. The heat that I used to be able to tolerate pretty well, knocks me for a loop now. I’m immediately tired, dragged out and can’t accomplish anything. People who are not plagued by MS haven’t a clue as to what we go through no matter how many times some idiot says, “oh yeh, I’ve had that before, I know how you feel.” Yeh right.

  • Devin Garlit moderator author
    2 years ago

    Thank you LuvMyDog! You make a wonderful point about it adding up. I just recently submitted an article about just that very thing, about how the problems add up over time. It’s very real and something I didn’t expect or realize when I was still early in my time with the disease.

  • DelightedHands
    2 years ago

    So often it is the ‘little’ things you describe that just suck the energy out of my day.
    I can’t open things, I drop things, I stare at someone a bit too long as I try to think of the words to respond. Sometimes it is so easy to just withdraw. Thanks for articulating the understanding-I get frustrated with people who say,”I know just what you mean; I get tired, too!” However kind they are trying to be, they don’t have any idea………

  • Devin Garlit moderator author
    2 years ago

    Thank you DelightedHands! All of the ‘little’ things add up for me too, it’s just exhausting, both physically and mentally.

  • potter
    2 years ago

    I am totally with you on the consistent temperatures, Kansas is a hot state and stores and restaurants don’t keep them cool enough. I cut my shopping visit short or turn around and walk out of a restaurant that it to warm. I have a different problem from my MS than most people have. My neuro explained to me my autoimmune system detects stuff in the air and thinks it is attacking me so it cuts off my breathing to protect me. So far I have had cat, hair, insecticides, mold, walnut and pine spores and other misc chemicals cut off my air supply. I have walked into several stores with incense burning or scented candles and have to turn around and leave. I can feel my chest tighten, I carry a EPI Pen but don’t want to use it. I am sure there are other people who have the same problem out there who don’t have MS. I wasn’t allergic to any of those things before I even use to sleep with a cat. Potter

  • Devin Garlit moderator author
    2 years ago

    Thank you Potter! Wow, I haven’t heard of that before, that sounds incredibly dangerous! Thank you for sharing it!

  • saccedes
    2 years ago

    I just saw rhis article and it simply hit home. Opening items or typing to text on a phone is difficult because with the numb hands, I also have vision issues so I’m constantly mistyping and can’t always do talk to text. Add in temperature change and it’s a wrap. People don’t understand because I was “normal” last year, I have in last 9 months gotten much worse and while it is difficult to admit it’s harder when others still look at you and see “normal”.

  • Devin Garlit moderator author
    2 years ago

    Thank you saccedes! Looking normal is often one of our toughest challenges. We live in such a visual world that it’s hard for people to grasp that there are problems they can’t see. I’m on a never ending mission to educate people about the “invisibility” of our disease!

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