Why I'm not hiding my disability at my wedding #Features#disability#fibromyalgia#wheelchair November 14 | Guest post by onelittlespark 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. Related Post Natalie & Tim's green-filled access-a-wedding This wedding has all the D's: an awesome dog, a handmade dress, art gallery-style personalized decor, and a focus on disability. The pair also came... Read more 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). Reporter Name * Reporter Email * Original text Enter the original text here. Edited text* Enter your suggested copyedit here. Notes You can add a note for the editor here. * Required information. Fix Typo Guest post written by onelittlespark I'm a wheelchair-using, Disney-obsessed engineer, who loves folk dancing and helps lead local Brownie and Cub packs. My man is a military historian who writes, rings bells and dances too. Oh, and by the way, we're both nut-buckets. http://tribe.offbeatbride.com/members/onelittlespark PREVIOUS A performance center wedding in Brooklyn NEXT Alyssa & John's homemade Oktoberfest barbecue in Amish Pennsylvania Show/Hide comments [ 57 ] 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. 14 agree Reply Also living with an auto immune condition. Sucks. I feel for ya. 2 agree Reply Not sure if it's relevant to you, but be sure to check out our archives if it is: http://offbeatbride.com/tag/fibromyalgia 3 agree Reply 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. 6 agree Reply 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! 4 agree Reply Much love to all my fellow Spoonies out there. Stay strong and keep smiling. 6 agree 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. 3 agree Reply 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! 1 agrees Reply Slightly OT, but what is the Rosa? 4 agree Reply 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 1 agrees Reply 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 3 agree Reply 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." 🙂 26 agree Reply The man has style! I hope we all get to see the photos of your fancy man when you get to the big day! 3 agree Reply LOVE this post! Congrats to you on embracing all parts of you! 🙂 1 agrees Reply "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. 22 agree Reply 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! 2 agree Reply 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 2 agree Reply 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! Reply 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? 1 agrees Reply 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!). 1 agrees Reply 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! 7 agree Reply Nawwwwwwww!! Awesome! 1 agrees Reply This comment brought tears to my eyes. What that guy did for his bride was super romantic, if I say so myself. Reply You go girl! Embrace who you are and enjoy life. I have lupus which attacks a bit of everything. There are days I can't move, am crazy tired, but we have to push through. Like you i refuse to let it control my life. Congrats to you! 2 agree Reply I'm with you on that one. Invisible illnesses suck, but there are far too many wonderful things in life to let them take away all your fun! 2 agree Reply Your post is wonderful. I say THUMBS DOWN to those people who think you should stash the wheelchair – it's YOUR day and you should do what you feel most comfortable doing. Your wheelchair is a part of who you are – your wheels are fantastically awesome legs (and I bet you could make some fabulous sparkly accessories for the wheels – lights even?!) I, too, have some chronic pain conditions (Fibro/CFS/Ray Naud's), which is why I'll most likely be in a comfortable pair of Chucks that are glammed for the big day…and naysayers can just naysay to themselves. 3 agree Reply Thank you! I know that people who think I should hide the disability more, have good intentions. They worry that I'll be treated differently if I'm labeled as 'disabled', or that my wedding photos won't be 'perfect' with a wheelchair in them. To be honest, I don't really care what labels people try to stick on me, as it just makes it all the more fun to confuse them; and my wedding photos will be perfect for me, because they'll show me and my new husband together. Chucks sound like good footwear to me – my sister got married in something similar, and she doesn't have any joint issues (she also had the date of the wedding embroidered on the back of them!). I'm planning to go for a nice pair Crocs ballet-flat style shoes (probably in red). Reply Speaking of clothing, I'm curious what you were planning for your dress; are there dresses that work better for wearing while in a wheelchair? I know that you said that you were planning to dance with your new husband (go you for planning it!), so maybe a completely redesigned dress wouldn't be what you were considering. Still, I was curious… Reply How to find a wheelchair-friendly wedding dress 🙂 2 agree Reply Thanks Ariel, that article rocks! I'm actually planning to buy my dress online (I hate clothes shopping – sorry!). The site I'm looking at can make to your measurements, and will make it in the colour you pick. I'm going to buy what was intended to be a bridesmaid's dress, but get it in white. That way, there's no big train to get caught around my wheels, I've not got so much skirt that it's overflowing over the edges of the chair, but I can still have a very pretty wedding dress (at a good price, too!). OMG Ariel. There really IS an article on OBB for every question. Thank you soooo much!!! (sorry for the delay in replying; for some reason I wasn't getting notified by followup comments and didn't see this until I went back and checked) 1 agrees Our archives go deep and hard. Six years of posts = most topics covered (at least once). 1 agrees FIBRO GIRLS FOR THE WIN! Reply I have it bad too, there are days I can't wear clothes, much less get up out of bed. Good for you for owning who you are. Anyway, people are always going to have an opinion, but you are who you are, if that's the case you may as well be who you are because they will talk regardless! Cheers to you! 1 agrees Reply Thank you all so much for your lovely comments! I'm sorry I'm not able to reply to all of you individually, but I wanted to let you know that it is amazing to get so much support from people I've never even met before. You're all wonderful people, with whatever you may be dealing with in life, and don't let anyone tell you otherwise! Reply I wonder if there are any wheelchair decorating inspirations out there? Would make a great Pinterest board!! Please make one and share! Or maybe do a DIY blog post with lots of ideas? X 1 agrees Reply Now, that's the way to live. Do things the way you want or make you comfortable and not in the way other people say. 1 agrees Reply YES. I am marrying a disabled person – current diagnosis fibromyalgia, but there is a possibility of Celiac's as well, but severe back problems exist pre-Fibro regardless. She's mostly homebound but uses a crutch for back/knee support when out of the apartment. I've had to deal with so many people questioning my choice of fiancee ("Won't it be hard taking care of her?", "Does she give enough back in your relationship?", etc. etc. etc. …). Is it so hard for people to believe that my soulmate happens to be in a body that doesn't function, but she's still attractive to me and I love her for who she is entirely? My fiancee plans to fight one of her friends (who may or may not be dressed up as a dragon or evil wizard) for my honor during the ceremony, while wearing angel/valkyrie wings, even if it kills her. onelittlespark, YOU GO GIRL! I know you know this already, but don't let anyone tell you what you can and can't do! 😀 3 agree Reply Yes, apparently my FH had some people asking whether this relationship is good for him, when I was first getting sick. I even offered him a 'get out' when we first realised this wasn't a temporary thing – he would usually tell me to stop being stupid and kiss me. Thankfully, though, everyone around us has had time to see how much we care for each other, and how good this relationship is for both of us. Yes, he looks after me physically, especially on bad days, but I find other ways to look after him in return. I don't know whether it's that some people don't take the pledge 'in sickness and in health' seriously, or whether they think it only starts when you say 'I do', but it's something that some of us live daily. I LOVE the idea that she's going to fight for you – that's cool and beautiful at the same time! You've probably got this one planned out already, but I suggest you use a foam LARP sword, so that lifting and wielding it won't cause too much pain or fatigue (also means if she hits her friend, she won't leave a mark!). 2 agree Reply Congrats on your engagement. I have a physical disability and recently got married. I had the experience of being photographed for formal events in the past, where my walking stick wasn't necessarily welcomed by photographers. So for my wedding we chose a wonderful photographer that was more than happy for my walking stick (or forearm crutch as its also known) to be part of the photos of the day as it is part of me. We ordered a blue one and the day before my wedding my cousins surprised me by decorating it, it was so lovely and I got lots of comments on it. I stood for part of the ceremony but had seats behind us so I could sit after about 5 minutes into the ceremony. We also planned a bit for my fatigue so after the wedding photos when fatigue started to set in we went back to our hotel room with my bridal party, I got back in my pyjamas for a rest and then got dressed all over again to meet the guests for the reception. No one noticed as they were having drinks and snacks and it meant I could last the night. As I can't dance much we did a two step shuffle for a bit,while my man of honours lovely wife sung for us, then the bridal party joined us on the dance floor to help us out, so we weren't the focus for too long and it was really turned out to be more special than a choreographed number. I identify as disabled too as its the environment and attitudes that disables not the impairment itself, so for your wedding it's so important to try to ignore expectations so you can rock out and enjoy such a lovely day. Hope it's wonderful! 2 agree Reply Oooh, I love decorated mobility aids – just because we need 'em, doesn't mean they have to be boring! The rest break sounds like a really good plan, I might have to find some way of fitting one in myself. We're having a Ceilidh after lunch, and I want all my energy to burn up the dance floor! A disability is nothing to be ashamed of – it's the people who make the world a less fair place who should be ashamed. If my disability upsets or offends someone, that's their problem, not mine! Reply Hi My walking stick bling was posted on my photographers blog just yesterday, so if you'd like to have a sneak peak here you go.. http://www.angelicapeady.com.au/2012/11/14/angelica-peady-photography-kath-and-rods-hunter-valley-wedding-at-chateau-elan/ 1 agrees Reply WOW!!! I love it, that is awesome! The crutch is almost as gorgeous as the bride (OK, a bit cheesy, but I do mean it). Way to rock the look! 2 agree Reply Gee thanks! When I was planning my wedding I was searching for images and video of people using mobility aids that were getting married for inspiration. In my search I came across these two first dance videos that I really liked that rocked the brides wheelchair using skills! A fun one: http://www.youtube.com/watch?v=OaAxMBeOe7Y A romantic one: http://www.youtube.com/watch?v=amBP3nfhq4Q 1 agrees I will have a similar problem with fatigue and dancing. Does anyone have ideas/inspiration for ways to keep guests entertained if I do need rest/if I cannot dance?? It's highly possible and didn't even think about that (so thank you all for that so I won't freak out later and make my body worse lol). Thank the gods for this great website I wouldn't have even known who to ask!!! 🙂 Reply It's traditional at Jewish weddings for the bride and groom to sit in chairs in the center of the dance floor and have the guests entertain them, with silly dances or whatever else occurs to them — maybe you could do something like that? 1 agrees Reply If you make sure the top-table get served first, you could slip away for a while between food and the speeches. Your guests will be perfectly happy eating, drinking and being merry for a while without you. You could even take your dessert away with you, to give you a little more time to rest. You don't need to do every dance (or even any dance) to make sure your guests enjoy themselves. There will always be other people to keep the party going, you don't need to do all the work. You could even ask friends and family to get others up dancing. To allow you more interaction with your guests, you could 'hold court' somewhere at the edge of the room, and have people come to you. Set up some comfortable seats away from the music speakers, or in another room, and have someone grab people and bring them to you for a chat. There will probably be people there that you haven't seen for ages, or that you don't know so well, and a quiet catch up could make from some really special moments. Reply As a MOB who is disabled and will need to use her cane (GASP HORRORS!) to get down the aisle, I was surprised at how many people were obsessed with how I was going to make it down the aisle. I mean, it wasn't even my wedding! OK, I'll be a bit slow, and not as graceful as some of the other mothers in recent weddings, but my daughter doesn't care, she loves me, as I'd support her if she needed assistance getting down the aisle. Sometimes people focus too much on the dis in disability and fail to see the ability in the word. Good for you going down the aisle in a way that's comfortable and 'you.' I perfectly understand not wanting to be a drugged out bride. Reply I can't believe that people who call themselves your friends and family have some kind of grievance with you wanting to be comfortable and honest during such a special and important moment. That mindset is not only selfish: it's abhorrent. Why would you, on this day that you devote yourself to ONE person for the rest of your life, want to present an image of something you're not? This, more than any other moment in your life, deserves an honest YOU to be present…the person your partner loves you for, not what other people think you should be. I'm "disabled," too. I have aggressive carpal tunnel and arthritis in my hands, a birth defect on my feet that causes me to be in constant pain, have absolutely zero balance due to inner ear infections as a child, and I'm a cacophony of life experience. After 26 years of physical pain, ridicule, and emotional damage, I've come to believe that our "disabilities" don't just extend to severe physical limitations or mental illness: our disabilities are gifts that set us apart from the rest, they're our "street cred," they're what influence our specific preferences; what attracts us and makes us be attractive to one, singular person. Rock and roll out in your chair, be the you who you love and who your partner embraces. All the best. 1 agrees Reply I came across your blog post just after I posted this journal: http://tribe.offbeatbride.com/journals/2013/02/dresses-and-disability Thanks for this. Reply What a great post! I have a minor disability (I had to have my knee and half my femur replaced) that makes standing for long periods of time, high-impact activities, etc., a no-no. For my traditional Catholic wedding I'm also going to have to make some alterations because I'm not able to kneel. I love that you are owning your disability and not hiding it! Reply Kuddos to you. Living with an autoimmune disease is very, very challenging. The hardest part is accepting it yourself. Then worrying about why others don't accept it also. If you have come to this acceptance, then you have overcome the hardest part. I live every day with Lupus and Fibro, I am not proud of it, but I am proud of where I am today opposed to two years ago when I was diagnosed. It is a long, hard journey. Congrats on your engagement and enjoy every single minute of your wedding the way you want too. Remember it is YOUR day and no one else gets to tell you how to experience it. Reply Question for brides/brides-to-be who use mobility aides (wheelchair, walker, crutches, etc). I wear orthotic braces on both legs and I am having a really hard time finding wedding shoes that are wide enough to fit over the brace but don't look old lady-ish or orthopedic. Shoes in general are a challenge but especially finding a pair appropriate for my wedding. Anyone know of a brand, store or website that could help me out? Thank you in advance Reply We have a couple posts that may be useful? http://offbeatbride.com/orthopedic-wedding-shoes http://offbeatbride.com/wide-wedding-shoes Reply You're all awesome. Reading these comments. I'd love to see an article or a Pinterest board with Creative ideas for decorating aides of different kinds. And for having them represented in cake toppers. Photos! Post photos! Reply I love this! I'm not sure where I will be physically when I get married, but if I'm still using a cane I'll get one to decorate according to my dress and colors. @bridetobe14 I've thought about making my own shoe company to focus on us ladies who want fashionable shoes but have certain requirements. For instance, I have a prosthetic leg/foot and need back zippers to make putting shoes on easier but most boots nowadays seem to be slip ons and all links I've found with more accessible looking shoes availability are rare or outrageously priced. Reply I have cerebral palsy, which limits the use of my hands. I'm looking for ideas on how I can put my bride's wedding ring on her fingeer. I know that she could put it on herself. But I really want to do it. 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