Let’s Get This Straight

cartoon with strong man lifting the wheelchair and its user

Jimmy and I are here at the Paralympics and London is full of wheelchairs right now. From athletes to spectators, you see lots of people in chairs. Of course the ones in my age bracket catch my attention the quickest. Well, the adorable children in their little tiny chairs capture my heart pretty fast!

The refreshing thing is the amount of independence that you see! As a wheelie, many times you are the only one around in a crowd of people and it can be pretty intimidating and lonely in its own sort of way. You are very different and feel it strongly – especially in the early days. I have gotten over most of the intimidation and have really embraced the fact that I am different so I will just be cool about it. The Push Girls motto is pretty good: “If you can’t stand up, stand out!” However, it is refreshing to look around and see many wheelchair users in a public setting.

There is something that must be said about independence and what does it mean. What to do or what not to do in certain situations. There are assumptions that are made by onlookers that I would like to get straightened out and that only happens by education and since I am passionate about educating then I am going to dedicate this post to it.

I have a strong opinion as a wheelchair user and my husband has a strong opinion as my partner. This creates sparks at times but without communication and working it out, you just become bitter and grow apart. Jimmy and I never want to grow apart and so we keep at something until we work it out. People have assumptions (wrong ones) about me as I sit in a wheelchair. People have assumptions (wrong ones) as to what they should do to help me. People have assumptions (wrong ones) about my husband as they watch his interaction with me. My mother said it best when she said, “I don’t know what to do sometimes. I want to help when I’m supposed to but I don’t want to get in the way when you don’t need it.” And I don’t want to be guilty of assuming (wrongly) that people exist now just to annoy me and get in my way!:) So, let the educating begin!

Here is what upsets me the most:

I do not like to be grabbed or pushed into a situation like I am helpless. Nothing is simple in this life anymore but I accept that and know that everywhere I turn, there is always a challenge. That can be as simple as a sidewalk with no curb cut-out to as complex as a huge flight of stairs. However, my mind is active and I assure you that I can look at a situation and assess it in 10 seconds and know what to do to take care of it. You see, that is my life and I deal with it every day. You may only have to think about it the one time you are with me. I will suggest how to handle it. I get very upset when that right is taken away from me. When someone comes up with a “better” idea, or a new plan to handle my situation that upsets me. It makes me feel belittled, like the situation is no longer a problem with accessibility but a problem with my mind. I am just as capable to see the problem and figure out a solution as you are. When you insist on your way, and I am supposed to be gracious and thankful, it is really emotional for me. I don’t know if I can ever explain this emotion as it has taken me 3 years for my precious hubby to “get it”. It has taken a lot of communication for us because he has his own issues with how people perceive him.

What upsets Jimmy the most:

Jimmy knows that I am capable. He knows what I can do or not do. He knows that I can handle a situation. He respects my assessments. However, his struggle is with how people perceive him. Because of their wrong assumptions about me as a wheelchair user, they then perceive him as not being helpful or a gentleman. For example, we are at a bus stop. I can get up the ramp and down the ramp by myself. I don’t want Jimmy to push me unless I ask him too. I don’t want help getting situated. He knows, he understands, and he supports my feelings. However, the bystander sees a guy with a girl in a chair. They see that he is not helping me. They see me struggle for a minute to get over the lip (which is fine and very normal!). They see that guy not help the girl with her struggle (which is also fine and what I want). They look at Jimmy like he is a villain and then try to help me themselves. That is very upsetting to both of us. First of all, I did not ask for their help so that is a no-no. Secondly, as my best friend, he wants to be the one to help me if I need it but he also knew I didn’t need it. It upsets him that people perceive that he is not helpful to me and think badly of him. As hard as it has been for him to understand what helping me without permission makes me feel like, it has been just as hard for me to understand what not helping me makes him feel like.

The education begins:

For me, it really is not complicated. For me, don’t do anything unless I ask you. Don’t rearrange a situation unless you would do that for an able-bodied person. For example, if I was walking and you opened the door for me as one nice thing to do for another human, then do it. If however, you saw me as a wheelie coming to a door and you have to about climb over me to get a door open, then don’t. I am very capable of opening doors and will hold them open for you as one kind thing to do for another human. You do not need to come and take a door out of my hand just to hold it for me. If you get there first and hold it for me, then I will be very thankful. If I get there first and hold it for you, then you be thankful and just keep on going. If I want pushed, I will ask you. Don’t assume I want you too. If I want help with an obstacle, I will figure it out and let you know how I need your help. I could continue on with many examples, but the truth is, this is just about mutual respect. Respect my wishes. Don’t treat me as a weaker person just because I sit in a chair. I have lousy legs but my attitude is as strong as ever!

For Jimmy, it is hard to educate people on how not to think bad of him. So, I will lay this out real plain. If I was dating Jimmy and he assumed to help me continually when I did not want him too, I would not think of him as a gentleman. I would think of him as rude and disrespectful to me as a person and I would break up with him. Is that plain enough? 🙂 To me, a gentleman is not a man who enforces his will upon a woman so that others will think highly of him. That is a bully. A gentleman is a man who will listen to the one he loves and take her feelings into consideration. He will respond accordingly even if everyone else thinks he is wrong. He respects her as another human, not a lesser being. He is much more of a gentleman to me by leaving me alone and struggling through something because that is what I want than to help me when I don’t want it. That is my Jimmy and if we were dating, I would marry him. Oh, I already did! I am SO glad!!

What should you have learned?

No, not that we are petty and easily offended. We really aren’t. We do think however that this is a confusing issue. In simple, don’t help unless you are asked. The disabled have learned how to ask and will not be shy to if they need it. Just be willing to help if asked and let them tell you how to help. They are experts on the how!:)

Don’t look at a situation and assume. That gets most of us in trouble anyway. If you see a couple, they have their own system figured out. I could not tell any other couple to handle things like Jimmy and I do. It works for us and we have it figured out. Another couple with a disability may have a completely opposite system. Couples work out what works for them and their relationship. Give them that respect and don’t draw judgement against them in how you think they should have handled something. You don’t know unless you are that couple.

I hope this has been helpful in knowing what to do if you are with a disabled person. Knowledge of how to interact with us will help take away the awkwardness of getting to know us. Just treat us like any other normal person and all will be fine!

Thank you for your willingness to learn! The world will now be a little better off!

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5 thoughts on “Let’s Get This Straight

  1. Here is a reply that I got from a dear friend, Ruth Winterton. I think it shows exactly what I was saying about the uniqueness of each couple and how they must assess their needs. If you would like to post your own perspective, then please do so!
    _____________________________________________________________________

    Hello Alicia! I have to confess, when out and about in my manual wheelchair with Neil, he is hanging onto my chair, often because he can’t see where he is going as well as helping push me, so it is safer as I can let him know of obstacle in front and everyone thinks he is the perfect gentleman!!!LOL!!!! My pride is assuaged because I am helping him and his is for me because he is helping me;)
    I do know though when Neil had his eye surgery and couldn’t lift anything heavier than a teacup that as I was finding it extremely difficult to get my amazing blue scooter out of the back of the van people looked in disgust at Neil. I also found that if people offered help and I said yes it would often lead into some very interesting conversations about how I cope with my disability and my views hope and future ahead, especially when I tell them I have a degenerative disease. To show them how God has given me grace and a certainty for the future is a delight, though sometimes to do that I have to lay aside my independence to open up a conversation:)
    If people offer help then I find, at the worst, it is an opportunity to tell them of my hope and help for the future as when someone helps you they also don’t feel that they can run away from you straight away when you are talking to them!!!An added bonus is that there are times when I am struggling but wouldn’t want to put on others to help me unless they offered, I would feel awkward in asking for help and would carry on by myself whilst realising with silent dismay that the payback for what I am trying to do is not going to be nice.
    There are times when I insist on doing my own independent thing (as I know you have seen) but the nature of my illness often means that as it fluctuates, what I sometimes think I can do I find I can’t for that moment in time and so God teaches me humility when I realise I can’t do something and I have to accept help. I guess because I can’t remember a time when I wasn’t finding my health a challenge and also the implications of being a burden on others which people seem quite at ease to communicate to you at times… That in turn with my pride (my pride is a constant battle) that it smarts to ask for help from someone who has no desire to give it. So I find that I am so much more happier to accept help from people who offer than to ask someone whom I don’t know what their response will be.
    Also, the thing is Neil sees the signs of my strength failing allot quicker than I do and if always left up to me I would spend more time in my electric chair because 2 days prior I really over did it and now I am paying for the rest of the week.
    I thought you would find my perspective interesting although different from yours!

  2. Found your blog from Dana and enjoyed your article. My husband is a C2 and has a diaphyramic pacemaker to breath. We are always laughing about the way people react and what they say etc. Yes, as a caregiver I am in the villan seat sometimes, but if people get to know you they know we are doing the best for our loved one. Great post and God bless, Cheri

    • Thank you Cheri for writing me! I agree that when people get to know you, they understand your situation and look at you differently! I thank you for loving your man!!

  3. I’ve had to use my wheel chair for the last couple of days. I’ve been teaching my daughter to let me learn how to use the wheel chair. She also knows when I’m over doing it and will tell me so. She’s usually right. She has decided it’s fun to run through the store at full speed pushing me and scaring me into believing that she is going to smash me into the display. Teenagers, ya gotta love ’em! She also scared the daylights out of me last night. I thought she was going to push me in front of an oncoming truck. I THOUGHT I WAS GOING TO BE FLAT AS A PANCAKE. She was having a blast! So if you should see my daughter doing this to me, just laugh and enjoy the comedy show. I know we are.

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