TAKING RESPONSIBILITY

We were invited by a business colleague of DDTF’s to his company Christmas party. We will call said colleague Friend A. Although DDTF met Friend A through business, we have built a warm and caring friendship with him and his wife over the last couple of years.

Friend A is very understanding of my physical restrictions and goes way beyond the call of duty in taking them into consideration whenever we get together outside of our home to socialize. The venue for his company party was specifically chosen because it presented no access problems for me. There is a very, very small step at the entrance which I can manage and there is an elevator to use that takes guests downstairs to the private function room where this party was being held. There were about 130 guests, a live band and a lavish menu. The restaurant is in Tribeca, New York so Friend A. arranged for a car to come and pick us up. It took us about an hour and 15 minutes to get into the city.

In situations like this it is easier for me to use my wheelchair. It is quicker and I avoid having to be assisted into the seat at the table and then out of it if I want to stand around talking to people. The front of house manager greeted us and as he was directing us to the elevator he mentioned it was in fact out of order but that this was not a problem as his staff would carry me down the stairs. He got the proverbial, “Excuse me?” from me. When I saw the staircase and the fact that there were 25 stairs down I knew there was no way anyone was going to carry me down, and then up again. Because we had expected the elevator to be working, we had not brought my portable blocks with which might have been an option if there had not been that many stairs. He tried to assure me that the bottom of the staircase did not lead directly into the function room thinking that I was concerned about whether the guests already downstairs would see me being carried down or not. I explained to him as politely as I could that I didn’t give a shit about what anyone in the audience might think of me, but that being carried was unsafe and just a little humiliating.

Friend A. came charging up the stairs with Mrs. Friend A. and they were devastated that this was happening. I felt terrible as well as I knew how much DDTF had been looking forward to this party. I insisted that I didn’t mind sitting in the main restaurant while DDTF went downstairs for a while. To cut a long story short, DDTF and I went into the main restaurant and enjoyed a superb meal. Over the course of the evening, Friend A. and his wife took joining us in shifts and eventually, they brought 8 of the party guests upstairs, we moved to a bigger table and went on to have a ball. Friend A’s business partner was left to host the remainder of the evening downstairs.

The next day I contacted Friend A. and asked him if he would be ok with me writing to the restaurant manager. I emailed him a copy of my letter as I wanted him to be aware of the contents. He felt I was being too polite but had no objection to my sending it. I told him that I had no interest in writing a guns blazing letter but that I felt compelled to make my feelings known. Whenever I find myself in these situations, I always think about those people who don’t always have someone in their corner like I always do. Some people are inhibited by being less-abled than others. I feel a deep sense of responsibility toward raising awareness not only on my behalf, but on theirs too.

I sent the following letter to the owner of the restaurant:

December 12th, 2006

CITY HALL
NEW YOK
131 Duane Street
Tribecca, NY 10013


Dear Mr Meer

On Thursday evening last week my husband, Daniel and I visited your venue as guests of Mr. Friend A, at the (company name) party.

I am sure you are well aware of the fact that when we arrived at the restaurant we were informed that your elevator was in fact out of order and had been since that morning.

In spite of the fact that we went on to enjoy a lovely meal in the main restaurant and were later joined by our gracious hosts and some of his other guests, I felt compelled to write to you.

It is so often that disabled people are overlooked and the importance of access to facilities is dismissed as unimportant. The gentleman who greeted us at the door was in the most polite of ways convinced that it would be perfectly acceptable to me to be carried down the stairs by your staff members. While this was a generous offer, I think it is crazy that anyone can make the assumption that a person in a wheel chair will find this acceptable.

Given that I might have arrived in an automated wheel chair, it would have been too heavy for anyone to carry me down. There is of course also the safety aspect. I can assure you that handing yourself over to a group of people to get you safely down and up a flight of stairs can be extremely nerve wracking.

Although disabled patrons might not be in the majority, we are people of value like any other guests that visit your venue. When you know someone is coming who is going to rely on the elevator being in working condition, you should check it several times a day to ensure its reliability. The more appropriate action to have taken other than the willingness of your staff to carry me down and up in my chair would have been to call ahead and advise your client that the elevator was not working. I could then have been contacted and given the option of declining the invitation.

I write this letter not as a complaint, but as a friendly reminder of the importance of the respect that should be extended to disabled people who might want to visit your venue.

Given the easy access to the main restaurant, the quality of the meal and the kindness of your staff, I would be happy to recommend the restaurant to anyone – be they able bodied or less-abled, as I prefer to refer to myself.

With good wishes to you all for a happy and peaceful holiday season.


DL

Mr Meer called me within a few days of receiving my letter. His response was wonderful and made for a nice change. I have never found myself in this particular circumstance before, but I have more often than I would like had good reason to bring things to various establishment’s attention. The general reaction is one of launching into excuses, very defensive justifications and a whole lot of nothing is said or achieved.

In this instance, the owner took full responsibility for the fact that his management had dropped the ball. He explained that the elevator was in fact shared with the residents in the apartments above the restaurant and they had therefore been aware of the fact that the elevator was not working since much earlier in the morning. Due to a part being needed for the repair that would only get there the next day, the elevator was still not working this much later in the day. He fully agreed that someone should have either informed Friend A. or called us to tell us. We could then have chosen whether we would still attend the party or not. They had our number because that wonderful man I always have in my corner – DDTF had called the restaurant several times to check that there would be elevator access. There really was no excuse for what had happened and the owner did not try do a whole song and dance around it.

I therefore wanted to write about this restaurant as it offers excellent food, great service and had easy access for wheel chairs.

If ever you find yourself in the Tribeca area of New York, I would highly recommend this restaurant.

PLAN B

Because of the extreme weakness in my legs and hip area, getting out of a chair is impossible for me. I have special chairs in my home that are automated and I make used of office chairs which have the facility to adjust the height. The higher the seat, the easier it is for me to get out of the chair as I can slide off it, rather than have to lift myself out. The same then applies to my wheel chair.

On Tuesday night I had to go to ‘BACK TO SCHOOL’ night at Ross’ school. I keep a special chair at the school permanently and whenever there are events there that I attend, they put it out for me in the appropriate room. It is a great chair that I bought from Pier 1 soon after we first arrived there. It is the height of a bar stool but it has arms, so I can ease myself into and off of it. It has become knows as my high chair.

The program for this evening required that I visit several classrooms and had to walk from one end of the school to the other, and back again in order to exit the building. This, combined with having to stand around in the rooms becomes tiring for me so it is the kind of event I would use my wheel chair for. I also walk slowly even when I am not wilting because I am tired, so chances are I would get to each next presentation a bit late.

As I really wanted to be there, I decided that the time had come for me to let someone else learn how to lift me out of my chair. This was a huge step for me. I was thinking about how I could best describe how this feels for me. In my early 20s through to my early 30s, when my mobility was still normal, I attended many workshops. I was and still am a spiritual seeker and I was always on one or another weekend retreat, course or workshop. One thing always came up on these workshops and I am sure as I start to describe it, you will know exactly what I am talking about. It is the dreaded trust process where you have to stand with your eyes close and fall backwards trusting that the group will catch you and you won’t end up slamming your head and back on the ground.

In spite of having been through this experience many times, I would feel the same anxiety every time. I think it was more about the total surrender it required than a lack of trust. When I am being lifted out of a chair, I have to surrender myself to the person doing it – completely! Only once someone has done it, can they know what I mean when I tell them in advance that my body puts no lift into the process. I rely totally on the other person to lift me, straighten me up and secure me on my feet so I can walk away from my wheel chair and move on from there.

I asked my sister if she would be ok to go with me and if I could come by her place over the weekend so we could practice with the chair. Not only was she totally willing, she was confident that she would be able to lift me without any problem. She did it twice by which time I had identified which part of it was not working for me. I had Daniel lift me in slow motion and I pointed out to her where she needed to assist me differently to what she was doing. She got it instantly, we did it one more time and aside from half squeezing her arm out of its socket, I was confident enough that we would be fine on Tuesday night.

As it turned out, I didn’t even use the wheelchair at the school. My sister was nonetheless so attentive and helpful. She was glued to my side and my elbow. At one point she went from Ross’ classroom all the way back to the gym to get my chair. Fortunately one of the dad’s in the room offered to carry it back.

Knowing the humor of the people who surround me, if I were to say this in a room full of them, I would probably have a whole lot of objects thrown at me and someone would yell, ‘Call the shmaltz police.’ I just can’t resist it though, I guess it’s a case of, SHE AIN’T HEAVY, SHE’S MY SISTER!

THE THIRD BANG

Last night the evening started off perfectly with my neighbors coming over for dinner. Daniel is away on business in Chicago and once or twice before we have got together for take-out pizza dinner. The neighbors bring it over and it is always a treat spending time with them.

After they left, I was clearing the dining room table and as is always the case when it happens, without knowing why, I fell. My falls always feel like they are happening in slow motion and this time was no different. The first thought that went through my head was, “DO NOT land on your shoulder – if you land on your shoulder again it is gonna wipe your shoulder out completely.” The only two things I can recall happening after that were grabbing the couch which pushed it further away from me because we have wooden floors and it slid; and then banging my head on the floor as I landed flat on my back. In all of my falls, I have never landed in this position and there isn’t a worse position for me to land in because when I am flat on my back it is VERY difficult for me to breathe. I have to really concentrate on not getting into a major panic as it truly feels like I am suffocating.

It took me a moment for my head to clear and with all the voice I could get out, I called for Ross. He responded with, “What do you need, Mom?” and when I said, “Help!” he came running down the passage. As he saw me he yelled, “Mama, how did this happen?” I told him I wasn’t sure but we need to get me up.

“What do you want me to do, Mommy?”

“Go downstairs and see if David is home.”

He flew down the stairs and was yelling for Dave but he wasn’t in the house. He came charging back up the stairs and called out to me asking what he should do now.

“Get the phone and phone Dave on his cell phone.”

“Dave, we have a problem. Mom has fallen, we need your help.”

I can’t adequately describe the relief I felt when I heard the garage door open almost immediately. Dave was here but outside. He and his friend Brian came charging up the stairs and the process of getting me up off the floor began.

I first asked him to just sit me up and sat for a few minutes getting my breath back. It is the feeling you experience when you jump up out of the water when swimming and you sort of run out of air. I was in a complete sweat by this time and it took just a couple of minutes to feel like I was breathing normally again.

The difficult part of lifting me up off the floor is that if you are not used to doing it, like Daniel is for example – you can really hurt yourself. I am not able to put any force or strength into lifting myself so I hang on the person like a dead weight. From the position I was in, he had to go down on his haunches, put his arms under mine, in a hugging position, and lift me up. This is tricky and I am always worried that both of us will fall. We worked out that it would be best for Brian to push a dining room chair in under me as soon as I was up rather than have Dave lift me off the floor straight up to a standing position.

While sitting I got Ross to get me a glass of sugar water. I didn’t know where my Rescue Remedy was and I am honestly not sure if the sugar water theory works, but I was raised on it and resort to it for fright when there is no Rescue Remedy on hand.

When I had got myself even more together, Dave then lifted me out of the chair and I started making my way to my bedroom. Ross insisted that I stop and not take another step until he was back and charged off down the hall in the direction of my bedroom. He came back with 6 pillows in his arms and laid them out in a straight line down the hall and said, “OK, NOW you can move.” I thanked him profusely and assured him I didn’t need a padded path. I thanked Dave and Brian and assured everyone I was OK.

A little while later Ross came to me and said that even though they are mostly for old people, I have to get myself a Life Alert. He also asked me what I would have done if David had not been here and if he was asleep. Both completely valid questions and I promised him I would look into getting a Life Alert connection.

When I woke up this morning to get Ross ready for camp I felt really achy. I have a really sore spot on the back of my head which made it uncomfortable for me to wear the mask for my breathing machine that I sleep with. It is exactly where the strap at the back of my head closes … would be, right? My right arm pit is aching and I just hope I haven’t buggered up my shoulder in any way. After he left, I went back to my chair and that is where I spent most of the day until Ross got home.

I’m not sure if it is delayed shock, but I have been bursting into little sobbing sessions on and off the whole day. I can’t stand it when I have these falls and it particularly freaks me out as to how this all impacts on Ross. He appears to cope really well and has now proven that he certainly knows how to keep his own peace. He keeps his head together and is more than capable of assisting me through an emergency. He told me that if this ever happens again he is dialing 911, telling them that his mother is disabled and has fallen and that she is on the floor … “And I need an ambulance NOW!” I told him that this would be the perfect thing to do.

During one of my little sobbing sessions this afternoon, I realized that there is an element of struggle for me in having to hand myself over to David. Our relationship does not involve any kind of closeness so having to surrender myself in this way to him is a tough call. In spite of this, he was compassionate, effective and obviously willing to do anything he could to assist me. If I don’t find the lessons in these events then I will never maintain any kind of peace with myself so in my ongoing quest to maintain my peace with my disability, I was reminded that when we do let go and relinquish control completely, that is when we are most in control. Somewhere inside of that there is strength to be found because trying to control someone or something else is a complete and total waste of time.

I find that when I go through one of these fall experiences and physically hurt myself, I feel like my soul distances itself from my body for a while. I need to just sit quietly and allow the one to find the other again. I know that in a day or two my peace will be restored.

PUT YOUR BUTT IN THIS CHAIR

I have decided to turn myself into a critic, or source for useful information through this blog.

It is always such a treat when I visit any kind of store, restaurant, hotel or place of entertainment where access makes it easy for me to be there. It really does enhance my overall experience and it also makes it that much less demanding on Daniel or any of the other people I am with who would have to assist me in getting in, out, on, off, up or down!

Regardless of what the advertising information says about anything and anywhere having DISABLED ACCESS, I always make a call directly to the venue and have a conversation with a real person, not the recorded message, to ascertain what their disabled access actually means. It is interesting how people find it really hard to conceptualize that a person might not be able to climb stairs. So, I ask as if I were talking to a young child. I have been known to say, “so are you sure there are no stairs – as in, if I were to be using a wheel chair, I can access every part of the venue – getting in from the street, exiting perhaps through a different door, and once inside, I could move around in my wheel chair without any difficulty?” I ask the “wheelchair” question because whether you are in a wheelchair or not, if you can’t climb stairs, then it is as if you were in a wheelchair from an access point of view. Please believe me, even when I have had “Yes” in response to all of those questions, more often than I would like, I get to a place and the first thing we see at the entrance, two, three or more stairs. If we manage to get inside and I have a conversation about having checked the access in advance and having been told there were no stairs, I am usually told, “oh well we didn’t think one or two stairs would be a problem.” At that point I smile and walk away.

So, when I get to a venue where I have had “Yes” in reply to those kinds of questions, and discover the answer is in fact truthful, it is a great feeling and makes for a great outing.

One such place was the ARS THEATER we went to yesterday in NYC. You can see more about it here.

We stopped for lunch at the TICK TOCK DINER. Most diners, like this one, always have great ramp access and are obliging about seating us at tables rather than booths which are a nightmare to scoot in and out of.

Details of Judy Gold’s awesome show can be seen here.

I really hope readers find this information useful, and I would be grateful to receive details of similar useful information at my email address. deelevin@optonline.net

A DIFFERENT KIND OF HEARTBREAK HOTEL

I dream about winning a huge lottery. One of the main reasons this is at the top of my wish list is because it would enable me to create some of the many things I want to create. I would love to create a play center for able bodied children with less-abled parents. If there’s a seat belt that secures a child to a parent’s lap on an aircraft, surely someone out there could come up with a swing that works on a similar principle. I would love to create a hotel with proper facilities for less-abled travelers. I would love to create a range of baby furniture that would allow less-abled parents to lower and lift their babies in and out of cribs and strollers and the various things babies are lowered into and lifted out of. These are just some of the many things I have on a whole host of wish lists.

I have never made any kind of serious investigations into travel facilities for dis/less-abled people other than visit a few websites on the subject. In most hotels, just taking care of basic needs becomes an exhausting physical nightmare.

Whenever we travel, we enquire about rooms with disabled facilities. Our experience has shown that when hotels say, “yes we do cater for disabled guests” it amounts to the following:
The room will probably be for single occupancy which immediately becomes a problem. Chances are greater that a disabled person will have a wheelchair to negotiate in and out the room and around the room. Single occupancy rooms rarely have floor space to spare. The bed will be pushed against the wall on one side of the room. This is to create more room on the other side of the bed for a wheelchair. This situation makes the room uncomfortable for the partner, be they less or full abled. A roll in shower should be the one facility a room with disabled access will offer. If you are fortunate enough, the toilet will be higher than usual and not a trendy, mounted on the wall with no “stem” crapper! As pleasing to the eye as these may be, a pole slapped on the wall next to the loo makes it no easier to get down on to a low loo, and offers little, if any assistance in getting up off a low loo.

Whenever Daniel makes hotel reservations, we ask if the room has a walk-in shower or if the shower is over the bath. Invariably it is over the bath and for someone like me, climbing over the side of the bath is really difficult. I have used things like telephone directories, baby booster seats, and other insanely inappropriate items to create a step to make it easier to climb into the bath to take a shower.

On our recent trip, we were told there is a walk in shower. While there was indeed one, it presented some interesting challenges. There was a step up into the shower and obviously then down into the shower that was too high for me to negotiate. Once in, the interior was a molded piece with curves at the bottom so the only part of the cubicle that was actually flat, was in the center. It was hard to get there! One night, we brought my portable steps/blocks into the bathroom, built a staircase and placed one block inside the shower as well. This was ridiculous. The “staircase” got wet from the spray because I had to leave the shower door open so Daniel could help me from outside the shower. The blocks are really slippery when wet, so the whole scenario was insane. When I look back now and picture the scene, I can laugh – but in the moment it is actually scary. I feel insecure and vulnerable and the frustration I have to deal with about the lengths Daniel and I have to go to just to take a shower, are, well, frustrating!

Then there’s the Jacuzzi bath. How nice it would be to get into a Jacuzzi and enjoy the massage of the jets on my weary body. Yeah right, less than f*ck all chance of that. There are three hugely deep steps up to the Jacuzzi and if, like me, you can’t sit yourself down on the floor, what are you gonna do, plop butt or belly first into the water? Oh well, simple pleasures like that you learn to just brush aside and you take lots of digital pics of your kid splashing around in the Jacuzzi.

There are so many different ways in which people can be less-abled that I understand it is impossible to cater to everyone. Does it not seem weird though that none of the hotel chains see any value in appointing just one single staff member to really research this? I wonder if the hotels even record how many requests they might get in a year about their ‘disabled facilities’.

I don’t mean for this to sound like a grumble or moaning session at all. Like everything else, it is all about the attitude you approach things with. I am fortunate in that have a husband and child who will move mountains if necessary to allow me to participate as much as possible in all activities. They have however given up on the Jacuzzi – we all let go of that one. Whenever I suggest to them that they should go ahead without me, that I will wait for them – they demand I come with as it is not as much fun for them without me.

I can’t help wondering though about those people who might not be as fortunate as me. What about those people who have way more severe restrictions than me because they are way more afflicted than me? Who includes those people on a vacation? Maybe I should write to Paris Hilton and give her a purpose in life. Maybe I should write to Richard Branson and see how he would respond. There’s got to be someone out there who would see some value in making a hotel with functional facilities for anyone with a less than perfectly functioning body.

After our recent trip to Canada, I want to give a big WooHoo! to Continental Airlines. They were willing to offer us all the assistance we needed and they made our air travel a pleasure.

WooHoo to my husband. Thank you for lifting me, lowering me, pushing me, pulling me, and most of all, loving me.

HELLO!

I refuse to refer to myself as DISabled. DIS has many connotations to many people, but for the main part, in this context, it is just too restricting for my comfort. There are many things I can’t do the same way as a fully abled body can, but I make a plan to do them differently rather than just abstain. This would make me less-abled … right? DIS suggests DISconnect – and I don’t like the idea of being labeled in such a way that I am excluded. I am as much a part of this world designed primarily for fully abled bodies as the next person – it is really all about my own head space. So, I hereby stand up and declare – MY NAME IS DAWN, AND I AM A LESS ABLED PERSON!

I enjoyed several highlights this week due to it having been Daniel’s birthday. One particular one was my visit to the OBGYN, or Gynae (pronounced guy-knee by us South Africans).

I have decided to start posting things on this blog with this topic for no reason other than it ranks as one of the most amusingly irritating situations a less-abled woman might find herself in.

Since being diagnosed with Limb Girdle Muscular Dystrophy – I have developed an ability that could be featured on the Sci-Fi channel I have it so finely tuned. I can scan a room in under 5 seconds and identify the problem areas without having to try them out first. I can see from a distance if I can use a chair in the room or not. One thing is for sure, ironically, doctor’s consulting rooms are designed for fully abled bodies.

For this and the list of other obvious reasons, a visit to the OBGYN is nothing short of a nightmare. The stirrup bed is a particularly annoying piece of equipment for a person who can’t raise their legs more than a fraction of an inch off the ground. Not only are the stirrups out of my reach, but the bed itself is very high. One would think that if hairdressers have chairs that can be raised and lowered, so would a doctor – but most don’t.

Begin first trauma here. How the frigging hell am I gonna get myself up on that bed dressed in nothing but a paper robe and my socks. No, this was not my choice; this was on instruction from the nurse. The bed has a built in step but even that is too high for me.

Some years ago, Daniel came up with a brilliant idea of portable blocks. These blocks are (measurement) and I use them primarily to climb stairs. So, while I stood in my paper robe, Daniel charged out to the car to get the blocks. These made it a lot easier for me to get my butt on to the bed and then Daniel and the very helpful Doctor helped swing my legs up, over and into the stirrups. The entire right side of my body was hanging out of the robe and I was feeling just fabulous at this point in time.

Lying flat is a major challenge for me because it becomes almost impossible for me to breathe in this position. While the Doctor raised the back of the bed, I was working hard at not sliding off the front of the bed. Why they find it necessary to drape the bed in tissue paper I will never know. If it doesn’t end up in a ball going up your rear end, it does nothing except make a noise and turn the bed into a foofie slide.

In order for the Doctor to insert his fingers into the places he needs to get to, your rear end has to kind of extend just past the end of the bed. Being in an almost upright position, legs in mid air and tochas sort of hanging off the end of the bed, I realized that although my muscles seriously lack strength, I was tensing them in such a way that it felt like someone was twisting me from the top of my head to the tips of my stirruped, socked, clenched toes.

As I reminded myself that the Doctor was not paying attention to anything I was trying to hide, cover, keep on the bed or disguise, the next highlight of the visit occurred. “Hello Vagina!” says the spotlight that the Doctor shines between my legs. I couldn’t help wondering if it is really necessary for that light. While investigating the places where the sun doesn’t shine, the Doctor always looks up at the roof, every time, so what does he need the spotlight on the star for?

While pondering these mysteries, there was a moment where I felt like a breakthrough for women had been made. For those women who have not recently had a pap smear you have something to look forward to the next time you go. You know the freezing cold ice tong they insert to make way for the over long ear bud (Q-Tip) they smear you with, well sisters, they are now plastic! Hooray, no more freezing utensils in your vagina! I thought the nurse was going to do a happy dance as she pointed out the joys of the ice tongs now being disposable. Who can blame her for being thrilled about not having to handle and sterilize the freezing cold, used ice tongs?

Needless to say, I was more than thrilled when the consultation was over. As I climbed off the blocks and rolled the robe up to stuff it in the garbage, I said to Daniel that this whole system is completely insane. I think it is long overdue for someone to invent a pill that we swallow when we have decided we are done with having children. One simple pill that just shuts the system down and declares and end to pap smears and all related activities. All things considered, periods, pregnancy, childbirth, breastfeeding, ice tongs, pap smears - all this and THEN menopause – gimme a break, enough is enough.