Why I’m not hiding my disability at my wedding

Guest post by onelittlespark
Newly-minted Mayfields
Here's one example of how a bride named Stacy decorated her wheelchair at her Episcopal Dr. Seuss wedding. Photo by Ben Blood.

I've often been told that I shouldn't think of myself as being disabled, that I shouldn't describe myself as a “wheelchair user,” or even that I'm not really disabled. I have great respect and love for some of the people who've told me these things, but I think they're wrong.

Before I go into the reasons why, I just want to say that this is only my view of my disability, and that I wouldn't dream of prescribing to others how they should define themselves.

When my fiancé James and I met, in our first year of university, I wasn't disabled. I had a history of intermittent joint problems throughout my childhood, but most of the time I'd be off going for walks, dancing or climbing trees. It wasn't until our third year that I started getting real problems — I had severe pain in my wrists and ankles, and on bad days could barely cross a room without wanting to scream. In the end, I was faced with a choice: use a wheelchair or become housebound. I chose the former of the two, though to a surprising amount of resistance from some.

Over the next year or two, my condition continued to worsen. Thankfully, James was never anything less than supportive, and has helped look after me through some really rough patches.

Skip forwards a few years and I'm now in a really good place. I'm engaged to my best friend. I've managed to find a balance of medications, supplements, diet, and routine that keeps me functioning. I completed my degree and am now working full-time as a design engineer. In my spare time I help run a Brownie and a Cub Pack, and go folk dancing when I can.

I'm going to decorate up my wheelchair, roll down the aisle and enjoy every last-minute of the day!

You may be wondering why, after going through all of the above, I'm proud to describe myself as disabled. The thing is, that I wouldn't be the person I am now, with the amazingly loving relationship my fiancé and I have, if we hadn't been through all that together. Yes, the Fibromyalgia is not a barrel of laughs; yes, I sometimes have a little personal pity party; but I love the person I am and the life I have today.

So, I've decided that I am not going to try to hide my disability at our wedding, though some might privately feel that I ought to. I'm not going to struggle down the aisle on my crutches, wishing for it to all be over so I can sit down. I'm not going to take so much Codeine that I don't remember my own wedding day.

Instead, I'm going to decorate up my wheelchair, roll down the aisle and enjoy every last-minute of the day! Our cake toppers are going to have my mini-me in a wheelchair, and I'm going to dance all but the first dance on wheels (for dancing the Rosa with my new husband, I can stand for a few minutes).

Comments on Why I’m not hiding my disability at my wedding

  1. Here here, why should you try to hide it when it’s part of you!

    We have friends with similar conditions so I sympathize with the problems… but just try enjoy the day! Looking forward to seeing ideas and pictures.

      • I love, love, love that OBB seems to have a tag for everything.

        I have chronic lyme disease (or something… no doctor ever seems to agree with another *shrugs*) which causes some similar symptoms- fatigue, pain, etc. so this fits right in with some of my planning concerns.

        Awesome.

        • Oh man, that was me when I got married in 2009…it’s a rough road, and I feel for you! Good luck dealing with doctors, and I wish you a happy marriage! I found it encouraging that my guy was already by my side “in sickness”, so I felt like we could face anything!

          • Much love to all my fellow Spoonies out there. Stay strong and keep smiling.

  2. Hmm. This is interesting! I’m going through the early stages of the downward joint slide, and my partner has been nothing but supportive and encouraging. I still have many fears and insecurities and frustrations, though, so THIS is awesome to see!

    Happy endings/beginnings… they make you feel like one is possible for you too, you know? 🙂 Thanks for this.

    • I’m really sorry to hear you’re dealing with this kind of stuff too. I hope whatever it is goes away soon, but it’s really good that you’ve got such a loving, caring partner beside you. Good luck to you, and to your happily ever after!

    • The Rosa (or Rozsa) Waltz is a beautiful dance created by the legend that is Gordon Potts. It’s the one dance that I do on my feet and, though it’s painful afterwards, it’s worth it. Here’s a video, if you’re interested (I don’t know who the couple are, but I like their style): https://www.youtube.com/watch?v=wR8Byo5sK2o

  3. What a touching story. More power to you! Be happy with who you are. This guy sounds like a keeper to deal with all that and get closer to you. Glad he put a ring on that finger! Congrats

  4. I read your beautiful post to my man. He is also disabled, a disease often called “bamboo spine”. He told me after hearing this, that he agrees you should be yourself, and he’s going to decorate his cane “and wear a top hat, because I’m classy.” 🙂

    • The man has style! I hope we all get to see the photos of your fancy man when you get to the big day!

  5. “I’ve often been told that I shouldn’t think of myself as being disabled, that I shouldn’t describe myself as a “wheelchair user,” or even that I’m not really disabled. I have great respect and love for some of the people who’ve told me these things, but I think they’re wrong.”

    This! I haven’t used mobility aids for a few years now, but I still have some serious mobility issues. When people say that I shouldn’t think of myself as disabled, I feel like they’re saying “In order to feel good about yourself, you should deny a part of your reality. I view you positively because I’m denying a part of your reality.” A disability is a measurable medical fact. It’s not a source of self-pity or unempowerment for me. It’s simply a fact about me, like the facts that I’m brunette, tall, and female.

    • Really well put! This is how it feels to me too, and actually it makes me feel worse, not better, about myself. This is part of who I am now, it’s part of what makes me ‘me’, so everyone else needs to learn to accept that.

      Besides, pretending it doesn’t exist won’t make it go away, so we might as well find ways of enjoying life with all it entails, disabilities and all!

      All the best to you!

  6. I’m happy that you’ve achieved so much in life and seem like a wonderfully together person. You should do that makes you comfortable and roll in looking like a million bucks with the love of your life. I hope you have a wonderful day and knock everyone’s socks off. I do hope that you get profiled, I gotta see that cake topper! Oh and your wheelchair decorations of course 🙂

    Besides, the whole cookie cutter bride thing is overrated, you don’t stop being yourself just cause you’re getting married. All brides are beautiful in my eyes and you will be no exception.

    Hugz,

    Sid

    • Thank you so much! Our wedding isn’t until late next year, but I’ll try and share photos with all you lovely people afterwards.

      Neither of us are really your ‘traditional’ bride and groom, so we plan to enjoy every moment of our eccentricities!

  7. Good for you! If you don’t mind my asking, what are your plans for the ceremony? Have you considered having the groom and officiant seated, so you’re all at the same level?

    • For most of the service, I’m planning to get a seat for him next to my ‘parking space’, but I’m not yet sure what he wants to do for the vows. When I go down the aisle, though, I want everyone else to stay seated, so I’m not craning upwards to see everyone (thank you OBB for that tip!).

      • A good friend of mine who uses a wheel-chair rolled down the aisle and then her groom and best man lifted her up on to a stool so she could be face to face with her groom. Watching them lift her up brought tears to my face, it was so beautiful. Afterwards, her husband just carried her back into the aisle and into their house while we all cheered! It was very romantic! I just love how he is able to be physically strong for her when she cannot. it’s kind of old fashioned, but it warmed my heart!

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