Getting Something Off My Chest

Hi Ed,

I am sadly in pretty much the identical situation as you seem to be in. It's difficult because most people until stricken with any sort of ailment or have someone close that is, are oblivious to the needs. They're just ignorant as they've never been faced with a similar situation. This hostess may have been embarrassed that she hadn't done something or wasn't sure if one of the other family members was going to help out. As is so often the case, I don't want help until it's too late. Then I'm stuck and I get frustrated because nobody is helping.
MS sucks. Progressive MS sucks more but I try to remain positive that I don't have something worse. You're allowed to be grouchy sometimes. I always try my best not to let my frustrations and anger show but that's definitely not always easy. Life throws us into situations everyday, not only MSers. Be grouchy if you want Ed. Just try not to drag others down with you. :) Just my opinion.

Hi Ed. In answer to your question, "should you have expected help?" my answer is no, and I never do. There could be all kinds of reasons why she didn't, and it isn't worth trying to figure out why. The solution? Ask her to move the chairs where you want them. That does two positive things. One, it gets you the setup that works. Two, it's a learning experience for her (maybe) for the next scooter guest. Re: the question, should your wife have gotten mad at you? LOL I'm not going anywhere near that one!

All the best.

Ye Gods, Ed, I would have asked the hostess before even being escorted anywhere. People can be blindingly ignorant and rarely understand mobility issues. Be forthright and just tell anyone that needs to hear...even when sitting in a scooter or using a mobility aid...I have MS (or other condition where appropriate), I need clear access to the table, would you please ensure that I have that, please...

I'm fairly outspoken though...in a non aggressive but assertive way. Most people are flattered when asked advice or to 'help out', makes them feel appreciated and that they've done something good for the day (earning karma points along the way).

And, it is alright to feel 'grouchy', and it is OK to let people know you are feeling grouchy because of X, Y and Z...just don't lash out if you haven't given others the chance to help out in a meaningful way.

Hi Ed
U're the customer - u should most def. say something. In the most reasonable way of course. U don't want said waitress spitting in your food.
If u like the restaurant, write to the management about it!
If not - never go again.
JC x

I’m sad to hear of your experience. As a carer of someone with MS, it is very hard to get the balance right: to be attentive without being over-attentive, hands off and respectful of her independence, without being negligent! All the more difficult then for a stranger unfamiliar with your condition to get it right(!) Still, in this case, the waitress was surely somewhat insensitive - perhaps you or your wife could have said something when she proposed the remote table? As far as being ‘grousy’ goes - I believe people with MS have more right than most, especially considering the condition also affects the emotions.

Hi Ed,
Asked for help? Personally, that's something I always (try to) avoid doing - still wanting to be (too) independent, I suppose - but, given the situation you were in, I would've asked the person nearest to me to move said chairs/tables. If that was the hostess then, yes, I would've asked for her assistance (in a friendly and light manner)!!
I think she could have been embarrassed, or maybe she'd offered help in the past to someone who had responded angrily? Either way, she was obviously 'out of her depth' and didn't know what to do. Just feel sorry for her.

Be grouchy, if that's the way you feel -- you've earned that right!
With the very best of wishes to you, Abbey xx

Every country should impose a law against prejudiciable treatment to all handicapped person. I personally believe that education has a lot to do with it. Unfortunatly, there is no law against stupidity !

Hello sir.

I like reading your columns very much here, and learn a lot from every one.

That is what I would say to you about your experience… it’s an opportunity to learn. Learn what? Lots of things… pretty much everything you listed in your post. Getting stuff off your chest is healthy, especially since it can start to get really heavy and hard to breathe easily. So many questions but usually not a lot of answers—at least not easy ones—in situations like what you experienced. Thing is, there really isn’t any right answer. You have to figure that out for who you are, and aggravatingly that can be like putting a puzzle together without enough pieces. Were you right to be annoyed? Sure, because it’s telling you something important that you’re missing, or maybe not addressing. Should you have expected the hostess to notice the chair and offer help? Of course! Most of us are human (at least at last count), and it’s very human to think that people are much like ourselves and would behave as we would in a similar situation. When they don’t act that way it doesn’t mean we are wrong, it just means we need to reassess the situation. Should you have spoken up sooner? Maybe… now you’re thinkin'! Just asking that tells you a lot of things about your frame of mind at the time; maybe you had too much on your mind already to have the presence of mind to ask, and similarly for the hostess. And then you get to the thing that seems to really be bothering you: should you have kept your mouth shut?

Absolutely not.

That’s how we all mainly communicate with the world, to let people know what is going on with us inside where they can’t see. It’s not perfect many times, and sometimes it’s trussed up in fancy language, or camouflage, or even sarcasm. It’s important to let people know where we’re at in our heads and give them the opportunity to respond so that we might gain insight as to wher they’re at as well. Then hopefully each can respond to the other’s needs… or at least learn. You may think this is all very obvious and rudimentary, and things that you already know quite well. But as a fellow MS'er who has experienced much of the same, I found out the more I learned the less I actually knew. And that’s okay because at least I’m learning.

Some people need to be trained how to figure things out, and if the boss didn't do that, then it's your job. The waitress might even have appreciated your input since she may have been hesitant to offer help if you really didn't show that you wanted it. Don't be afraid to speak up. I usually call ahead to ask about the setup of the place I'm heading and to see if there's an easy way for me to maneuver. Better luck next time!

Hi Ed! Everyone had such polite replies. Of course if she had an ounce of common sense she should at a minimum moved the chairs for you. I guess I would have stopped at the first obstacle and said there was no way to get through. It’s just not rocket science, and whether you’re in a scooter,Or pushing a stroller she should have made sure there are no obstacles for a customer.

Hmmmm. Odd that your wife or daughter or son-in-law or two grandkids, in all these years, have not honed a sixth sense of what needs to be done, and quietly do it without fuss or attention. Five of them and only one unfamiliar hostess.

Well Ed,
I constantly am reminded of my issue. I really feel at times the hostess is pushing me out of the way and hiding me so others cant see. We are almost (at least 80% of the time) shown to the furthest table in a restaurant regardless of patronage present. I have been places where we (wife and I) are the only two people in a restaurant and the same thing happens.

I seldom say a word and just go with the flow even though it is very difficult to walk the distance or avoid the obstacles. My wife sometimes does say something as it is so very obvious.
I just take note and don’t return.
I vote with my dollar.
I really tend to agree that unless people understand the difficulty personally they blow it off and move on. I understand myself as I was a jerk in my early years in a similar fashion. I can’t complain when the person is doing what I may have done myself. I only now wish I hadn’t been so harsh but I can’t change the past, but can and do handle things much different.
So don’t beat yourself up. We all have bad days, and although I hope no one has to deal with our common issues, someday that person may well have to and then they too will realize their past errors.

You were justified in being annoyed with the hostess, but rather than letting the experience spoil your mood, you could have (as Yvonne suggests) simply stated that the location was not suitable. People do that all the time in restaurants (they don't like sitting by the window, too near the door, under the AC vent, etc etc).. She could have located you in a more accessible setting or made it easy for you to access the spot she chose. As John Conner said, you are the customer. Your patronage helps pay her wage.

I'm sure she would have put you guys in a more convenient spot if you mentioned it. She was probably ignorant of the issue or simply zoned out and wasn't thinking.

Yes you were right to comment and yes you should have spoken earlier. I find it is quite often necessary to ask for a different table from the one offered. My wife would often be in there asking before me.

Ed, I too use a scooter or walker and as soon as someone is ready to show us to a table, I mention that I have trouble walking so the closest table would be great. In terms of pushing things out of the way, I usually find that whoever I am with goes ahead of me and does the pushing . If it's not someone who knows to anticipate that, then my opinion is that you ask that person to help before you weave your way to the table. Many of us with MS were take charge people before we started having walking or other issues, and for us, we are not used to asking for help but now I must and I am OK with that. Often there are are people who ask me if I need help--especially in a parking lot. I make sure that I thank them for asking because although I may not need them at that moment, you never know when you will. Keep asking for what you want and then you won't have to be angry.

Ed:

You should have asked for help rather than getting irritated and have it spoil your evening. I hate asking for help, too. It's taken me 20 years to just say thank you and smile
when someone has made a big show of running across the room to help the handicapped lady open the door. I hate people staring at me, or even noticing me. But sometimes with this disease, you just need to ask for help. Other people don't know what you need until you tell them. Maybe some other handicapped person snapped at them for helping, who knows? I finally realized my problem with people helping me was that I hate this disease and people didn't used to have to help me, and that it seems like everyone else can walk so effortlessly, and I can't. That's all about me. Give yourself a break and have them move things for you.

I particularly agree with Alan Abramowitz's comments but I am really shocked that the columnist's family members offered zero assistance. Didn't any of the adults, other than the writer, see the obstacles up ahead and alert the empty-headed hostess so that she could create better solutions to the problems? I've never been in such a big group since being diagnosed, but I would only expect an accompanying family member to give aid and survey the territory ahead, so to speak.

Dear Ed
You and everyone else with MS or any disability should always expect people to offer their help. We need more understanding and compassion in this world. Tell me when being a good human, taking the time to give to someone else, is something we need to even consider being right or wrong. If I'm having a good day I like to say. "No thank you, but I really appreciate your offer to help" or "A big thank you if you need the help. Sadly, their are more days that we do need help as we age and you will feel so grateful for the help..
I hope this helps you and as far as your wife, I think she should have been understanding and maybe offer her help to you.

I agree with Dolores that the adults could have helped. I'm sure this isn't the first time they've been out together. Also if the hostess had never encountered this before it would be a learning experience for her to help future customers. Most people appreciate being told how they can help if it's a new situation for them.

I use a four-wheel walking frame to get around in public, and occasionally need assistance to go up or down a kerb, or through a door. Sometimes people offer to help, but at other times I'm not averse to call upon random total strangers walking by to aid me. I never actually expect anyone to help me, and I am genuinely grateful when they do. (I don't recall anyone ever saying no, but COVID and social distancing may have an effect - my part of Australia has actually been COVID-free up to now).

Ed, hello!
I'm not in a wheelchair, but I completely understand you. Yes, people may not immediately realize that you need their help. They may be afraid to offer it, so as not to offend you. But this does not mean that you will not experience irritation, despair, anger, pain. These emotions are quite natural. You or your relatives should have been told immediately what the requirements are. The client is always right. They should take into account your requirements.
When I ask in advance to turn off the recirculators, in most cases people turn them off. They are very dissatisfied with this. But I try to remind myself that this is completely my right. A minute spent in a room with recirculators is another migraine. Another migraine is a step closer to the appearance of a focus of demyelination and stroke. Their discontent should not worry me. I don't force them to do something unacceptable. And you also should not be afraid to make demands or claims, so that it is convenient for you. Waiters and cafe owners will not get worse, they will not break the law if they help you. State your requirements. You have every right to do this!

As an addendum it’s been my experience that as the first poster pointed out, that the hostess was probably oblivious to your actual ability and didn't ask if you wanted or needed help. I am actually bed-bound in a nursing facility and the CNAs are constantly oblivious to the fact that I’m quadriplegic (technically triplegic) and need help with almost everything, and it’s their job to understand my condition! Usually it just takes a gentle but firm reminder to get the help I need. But it also depends on the person I’m dealing with, which is also a learning process and there have been many times I wasn’t in the mood to have to deal with… again. Considering my condition and situation, it’s completely understandable that I would get upset or ‘cranky’ having to explain something that is quite obvious to me, and by all objective accounts should be obvious to others as well. Especially people who deal with it constantly in the course of their job. I have definitely noticed though that it seems without actual firsthand experience with my type of disability, the other people are aware but ignorant of my extensive need of help with pretty much everything. A good example is in specific language: many times the CNAs will exclaim that they know how I "like" to have things positioned around me in the bed, and I have to correct them that no… it’s actually what I "need.” I have to explain for the umpteenth time that it’s not personal preference or ‘pickiness,’ but an actual need to be able to do as much as possible by myself or to avoid suffering. The specific language gives me a window to the other person’s frame of mind/frame of reference.

I am with you 100%. Usually someone will volunteer help(which I never turn down) & friends & family have been terrorized enough to know- you help or else!? My pet peeve is restaurants that have only “bistro” style tall tables & bar stool type chairs. I simply ask for a normal table & chair & we make spectacles of ourselves by sitting down low!

I'm late to the party and see that many of the points I thought about bringing up after reading about your experience have already been brought up. I've only known that I had MS for 6 years and have only been a full time wheelchair user for the last 2, so I only have limited experience with this topic. I have found that the majority of people are more than willing to help or accomodate, but don't know how or are hesitant to ask because they've been told ad nauseam how proud and independent handicapped people are and can't differentiate between the different levels of ability.

"The last guy I saw in a wheelchair could pop wheelies and was on his way to go rock climbing".

"Ah yes, he is a paraplegic and has really good upper body strength. I have progressive multiple sclerosis and don't". They see the mobility device, not the individual disability. I suppose I could put a sign on my wheelchair, but I doubt it would make a difference and then I'd have to explain MS and how it's not a one size fits all disease.

My dear wife who has watched me go from a limp to a power chair in a few years has to remind me from time to time that she's not a mind reader. Somedays (some hours) I can tie my own shoes, sometimes I can't. She's very intuitive but also needs to hear that I need/want help.

Before the wheelchair I used a rollator and one time at a restaurant, a hostess sat us all the way at the back of the establishment. When we left and she gave her customary, "I hope you enjoyed your experience", I sarcastically remarked that that I had burned the entire meals calories just getting to and from the table. She was genuinely confused and after some discussion, (bless her, she honestly wanted to know what she'd done wrong and how to fix it), we determined that she really, really thought the rollator made the walk easier for me and that I'd be insulted to be sat at a closer table.

I should have said something prior to getting to the table, but pride kept my mouth shut. I was a green beret before MS and have a lot of pride. It's a two edged sword. Somtimes I'm too proud to ask for help or accomodations. I know I need it, but I want to be asked so I can "grudgingly" accept and keep some of that pride intact. Most people seem to want to help, but either sense that pride and want me to ask first, or just flat out aren't mind readers and don't know how to help.

Ben Hofmeister
18disabled.com

Hi Ed,

You party’s path to be seated is most likely the path to be used when leaving. This includes exits during emergencies. I believe you always want to consider your options in this regard. Especially when less than completely mobile. I get that a restaurant wants to secure a dining area, but evacuation preparation should always have been made. From your description, I have my doubts in this case. It is up to you to say that a table far from the exit is not acceptable. Educate your family about why this is important for them as well as you. This probably limit your dining choices but in the long run you will be safer and more comfortable.

Hi Ed,

Let’s put MS aside for a minute, I was diagnosed six years ago. I have been a small business owner for 23+ years and grew up in the restaurant business, which my family have owned a few. When we go out, we are going out for a positive and enjoyable experience.

As an owner and manager, I would want to know how my staff treated you and how your experience was good or bad. To change and make your experience better we need to know what we did wrong and what we did right. The hostess and manager both failed in providing you with a positive experience.

You shouldn’t be afraid to ask for assistance if you need it, at the same time it was apparent you did, and it should have been offered.

We live in a customer service world and unfortunately there is a lot of bad customer service in all areas. Please let us know the negative and positive because we want to know.

Funny, your situation reminds me of a dilemma I has just four days ago, as I was traveling. I am a women with MS who uses a walker. I had checked into a hotel late one night, and after parking, was unloading my van by placing my bags on my walker. I wheeled it to the side entrance door, used my key to unlock the door, then began to navigate the large bump and gap in the threshold while holding the door open for myself. There were two men talking by their truck across the driveway. My bag fell off, and I became wedged in the door briefly. One part of me wished they would offer to hold the door open for me while I rolled my load into the building. The safety-conscious side of me was relieved that they did not, because what if then they tried to help me to my room? That is a scary situation for a woman. In retrospect, I wish I had called one of them over to simply hold the door, then send him on the way. Instead, I muddled through. I am independent, and tend to insist on doing everything myself. But as I go further into disability, I am trying to know when to ask for help. I feel better doing it on my terms.

I have to wonder if men worry much about the dilemma of seeming threatening vs. being helpful. Has "Me too" created so much anxiety that men are reluctant to help? I am curious.

Sorry to hear there what should have been a nice evening out turned into a frustration that brought your MS top of mind. As a card-carrying cynic, I tend to believe that most people are oblivious and spend far less time thinking about anything outside their immediate sphere than we’d like them to. Unfortunately, that means it falls to us to raise their awareness to our issues, even when they are in a service job. My OpenTable profile contains a note that I use a wheeled walker and will need an accessible table. If I’m calling to make a reservation, I bring that up. If it’s a walk in, either my husband or I will point that out (see: most people are oblivious…). We’ve also learned the hard way that sometimes you just have to say, “Look, I can’t get through there, is there a clearer path?” Look at it as an opportunity to educate and raise awareness so that the next disabled person has an easier time. And count me among those who are surprised that one of the adults didn’t move to assist or even guide the kiddies to help grandpa (depending on the ages). Reinforcing awareness and thoughtfulness is something we all need all the time, at any age. If somebody had done that for your hostess when she was kid, maybe your evening wouldn’t have been spoiled. Finally, being disabled increases your influence. Drop a note to management mentioning what happened. Don’t call out the hostess by name but use the opportunity to describe the challenges of navigating their establishment with a mobility aid and how they could develop a procedure to improve matters in future. You have a bully pulpit. Use it.

Ed, thank you for starting this conversation. My daughter, who has had MS for 30 years, has lost all functioning of her lower limbs and like you she rides a scooter. The only way she can get on it is for her husband to lift her on and off. After living a very active life she is now in the secondary progressive phase. She has had the same experience you went through at restaurants and other places. It seems that if people do not see signs of injuries that causes a person to be on a scooter they feel like that person doesn't need help. I find myself being the referee when I see this happening. I no longer worry about telling someone that this is not going to work. I feel like that will help the other person to learn what to look for in doing their job. On the other hand there are hostesses and others that go out of their way to accommodate my daughter. God bless them and God bless you and all the people who post on your columns. Very important information is gained from their comments.

You're so right! The hostess did not know any better. She needs to be taught the inabilities of the public. If she had known, it could have had a better outcome. Perhaps in the near future, hostesses will be aware of peoples disabilities--just ask, "what can I help you with?" Thanks.

'