I am back in the saddle again with my book, The Disability-Friendly Wedding Planner, and I’m telling you, it’s gonna be a long road.
The book’s purpose is to help disabled and chronically ill individuals plan their weddings, but I’m not entirely sure it’s doing that right now. I’m talking to one agent who hasn’t gotten back to me yet after submitting my manuscript, and I nervously await the next steps.
Additionally, or not additionally rather, the book has been slashed a bit. It no longer covers as wide a net of disabilities as I had once liked to. Now it only covers mobility, chronic illness, and chronic pain, which when you think about it is pretty huge. There are lots of chronic illnesses and chronic pain conditions out there, and lots of varying degrees of mobility.
I have lots lots lots of research to do, and if you’d like to help, email me.
I love my beta readers. Without them The Disability-Friendly Wedding Planner would not exist. Most of them are my family, so I owe them my life. However, I struggle with my beta readers from an ideological standpoint. This is something very real.
Before the book changed its name and content, my beta readers were great. They still are great, but with much crappery.
When the book transitioned to The Disability-Friendly Wedding Planner, things changed between me and my beta readers. I told my beta readers I wanted to include men, they responded men weren’t to do any wedding planning. Then, when I said I wanted to include genderqueer people, they responded with, “But they already have wedding books. Everything is already about them. You see them everywhere.”
Them. Them should be a curse word, unless you’re referring to gender-neutral pronouns.
We live in an Us vs. Them world, where many people see themselves as an US, while everyone else is a THEM. Thems are subhuman, immoral, and undeserving of what US have. Us are kind, intelligent, noble, moral, and good. Us deserves their rights and protection.
Ultimately, Us does not understand Them.
There is a way to be a Them on multiple levels, an Us on multiple levels, or partially an Us and partially a Them. This is called intersectionality – the blend of a person’s social identities that either brings them a cocktail of power and/or submission.
For queer disabled folx, they have many blends of social identities that make them a big ol’ THEM to the white, cisgender, Christian folks that have been volunteering to read my book.
Not everyone like that THEMS folx, but a few do. I hope with my book, the thems of the world are exposed as US to somebody – a lot of somebodies – and eventually everyone.
If you are a good person, hit me up in the comments. Please help me with my project. Please please please. Even if you aren’t queer, if you have chronic illness or a disability, this project can help you. This book is a traditional wedding planner for everybody – and I mean every BODY. A disabled body is an every BODY. People never realize it, but in the blink of an eye, the progression of age, anyone and everyone eventually becomes disabled. Just think of your 80 year old grandma, or how I went to athletic and active to occasionally using a mobility aid and unable to walk my dog.
A disabled body is an every BODY, so the book includes everybody.
The whole point of The Differently Abled Bride Guide is to help people. I want to help people by letting them know they are not alone, provide practical advice and inspiration, and ultimately show the world we exist. We are here, we are loved, and need to be treated fairly.
While I’ve been promoting and asking for research for grooms, a kind fellow member of the Chronic Illness Network informed me that Differently Abled is a slur. When I was in University, before I became disabled, I learned that Differently Abled was how to refer to a disabled person.
I admit that I grapple with the term disabled, as I assume many do, which led to the original title of the book. Usually I rejected the term because of able-bodied friends throwing shade at me or they could not believe that the high achieving, hyperactive, goal-oriented girl who wanted to save the world couldn’t go to the grocery store without a mobility aid because…. she had some Whiner McBabypants fake disease like fibromyalgia. People with fibromyalgia weren’t “supposed to have this problem.” I had something else, it was my husband, I should be a better vegan… You know, I’m sure, if you’re reading this, how it goes.
Honestly I wanted to be able to catch those with invisible disabilities who didn’t have the image of disabled in their heads in this book as they are covered as well. The book also covers wheelchair users, paraplegia, the blind, the Deaf, and other classically-thought-of nomenclatures of disability.
The project is renamed The Disability-Friendly Wedding Planner and will cover brides, grooms, and non-binary folx who are disabled. I need people to interview, so please consider contributing to the project.
If you would like to help my project, email me or comment on this blog.
In the past, I was an art student studying graphic design. It was my dream to create beautiful things for others. But then I dated some jerk who told me I was too fragile to spend time in the studio without him, and I switched to the liberal arts.
It was the greatest regret of my life. I vowed that I would never let anyone or anything keep me from achieving my goals.
As some of you may know, I’m in the process of being published. I will be talking about this a lot for more than one reason, namely because it’s an emotional rollercoaster, and anyone who reads this blog knows I am pure emotion. I am 100% F in the INFP.
My post yesterday revealed the staggering amount of rejections I received in a month as well as someone attempting to con me. I’m not giving up, but I do need self-encouragement on my journey.
A weird thing I like to do is go back to my art roots and design dummy covers. Every morning I design about 6 and choose one to three that I like best. I choose my favorite to be my wallpaper on my phone and computer, and the grand slam of the week is printed out and taped to my desk. It helps me imagine a book on the shelf.
I have a creative vision of what the book will look like: delicate, cute watercolors. Because the book covers so many different types of conditions, I wanted a classy way to be inclusive. No bodies will be represented with images. No mobility aid depicted in a pictorial form. Just symbolic representations of what it means to traipse along the wedding planning process in a whimsical way. The book is full of whimsy.
The book needs to communicate that the differently abled, disabled, and chronically ill are people who are loved. People love us. The world needs to know that.
And with my pep talk, I hope you are looking forward to the weekend, and have a happy Thursday.
Katherine gave me a wonderful love story in her wedding interview – virtual interview Q + A. It was amazing to hear what her husband and she went through to be together. That’s the stuff books are made of ( and I do believe Katherine does have a book – please check out her blog, it’s lovely and very informative).
Katherine was one of my first followers on this blog when it was a wee zygote, and my blog is still in it’s embryo stages. On my last Spoonie Bride post I talked about collaboration. Collaboration can be as simple as supporting someone’s work. So, thanks Katherine!
Now, on to the interview.
Q1. Tell me everything there is to know about your condition & how it specifically relates to you. I have Postural Orthostatic Tachycardia Syndrome (POTS) which is a condition that causes dizzy spells, chronic fatigue and a fast heart rate. These symptoms mainly occur when you are standing up (hence the postural part) and those with POTS fall onto a spectrum with regards to the severity of their condition. I have a very severe form of POTS that left me bedridden for several years.
Q2. What is your wedding story? My husband and I met in our first year and he proposed after just 6 months (he was 18, I was 19). My husband was on a three-year course and I was on a four-year course. We had always planned to get married the year after I graduated from university. However, I developed POTS in my final year and became bedridden almost instantly, so we decided to postpone our wedding until I was well again. When I found out that I had a long-term chronic illness, we had to make a decision on when and how we would like to get married. We decided that we didn’t want to wait any longer as we had been engaged for almost 5 years at that point. We scaled down our wedding plans and I started physiotherapy so that I would be able to walk down the aisle. I planned our wedding in the space of 6 months and made sure that we still had all the little details that we’d originally planned such as themed ring boxes and a chocolate fudge wedding cake.
Q.3 What was your venue, how many did you look at, and what factors did you consider in looking at a venue?
As we only had a short space of time to plan our wedding, we didn’t have a huge amount of venue options for our wedding reception. We ended up booking the venue next-door to the registry office who catered for wedding parties and had a dedicated wedding planner to organise these events. Everything was going smoothly until I disclosed my illness and requirements to the wedding planner 2 months before my big day. Communications were sporadic after that and they didn’t even show up on the actual day! My Maid of Honour even had to take over and organise the cake.
Q.4 Did you require any special catering? Because of my POTS, I am not able to drink alcohol so I arranged for a non-alcoholic alternative for myself. Unfortunately, I was still given a glass of champagne when I arrived. I can’t manage large meals, so we chose to have an afternoon tea style wedding reception instead of the standard 3-course meal so that I could enjoy the food without fear of overloading my stomach. Q.5 Did you have any symptoms on your wedding day? If so, how did you manage? I planned the day to minimise symptoms. I arranged to have the ceremony at 2 pm, a time when I am most alert and my morning meds have kicked in. I also sat down for my vows which I thought would ruin the photos, but they turned out great! Q. 6 How big was your guest list and wedding party? We only had 20 people attend our wedding which included close friends and family. I had 3 bridesmaids and 1 brides-man. My husband had 3 groomsmen.
Q. 7 What was your dress like, where did you find it, and was it a certain way to accommodate you? I wore a vintage 50’s style tea-dress which I had altered to fit me. I had a coloured petticoat added so that it would look nice when I was sitting down to give a pop of colour. Q. 8 What are 3 things you would like a wedding vendor to know? 1. Not everyone is able to have a big wedding. Small weddings deserve your full attention as well. 2. Accessibility and accommodations are not optional and are requirements for everyone to enjoy the day. 3. Be professional. Educate yourself on your client’s disability or illness to better understand their needs.
Jess was kind enough to go over her heartwarming wedding experience with me today. During these troubling times I know it’s hard to carve out space for collaboration, so I am doubly thankful for her getting back to me with my standard 8 questions.
I am hoping the Spoonie Bride Project will be a great collaborative project where all of us Spoonie gals come together for a bigger goal: turning the bridal industry upside-down. After joining the Chronic Illness Bloggers Network, I am thankful for the ability to connect with other bloggers trying to make a difference – most in more nobler ways than I do – and putting me in communication to better realize my loftier goals.
So, thank you, Jess, let’s get on with the interview. Check out her blog please and thank you!
Question #2 was omitted per request.
Q1. Tell me everything there is to know about your condition & how it specifically relates to you.
I have hypermobile Ehlers-Danlos Syndrome. For me, it means that I manage a lot of leg, hip, and neck pain and my ribs and vertebrae subluxate frequently (less frequently after a year of physical therapy!). I’m fortunate in that I don’t dislocate at all and have done enough strength training that I do not require bracing of any joints. My hEDS really affects my gut, which affects my skin a lot, so I am constantly watching my diet to avoid trigger foods that could cause gut issues and acne/eczema. Stress management is crucial for me too because any stressors (good or bad) will trigger pain, gut and skin flares.
Q.3 What was your venue, how many did you look at, and what factors did you consider in looking at a venue?
Our backyard was our venue. I looked at probably 5 other venues but they were all so expensive and many of them had minimum guest requirements. We never wanted a very big wedding and even inviting everyone we would have liked to have there, we wouldn’t have met the minimums. Plus when we realized that the venue money would be better spent doing a lot of the landscaping we already wanted to do to our backyard, we decided that was the way to go. And the whole stress of planning a wedding at an actual venue was too much for me.
Q.4 Did you require any special catering?
We took our wedding party out to dinner at our favorite local New Mexican restaurant. I was able to special order my food so I could (sort of) stay in compliance with my elimination diet, but I didn’t make too many dietary concessions because I just wanted to enjoy my wedding dinner! I paid for it a little over the next few days, but not too bad.
Q.5 Did you have any symptoms on your wedding day? If so, how did you manage?
I was still having some head cold symptoms and a fair amount of fatigue but didn’t have any gut, skin, or pain flares thank goodness! Everyone was really helpful and all I had to do was ask for help if I needed it. We had already communicated well with everyone about how we wanted to keep things relaxed and enjoyable and everyone really stepped up to make that happen.
Q. 6 How big was your guest list and wedding party?
We had 9 people total, not including my husband and I. And we didn’t really define a wedding party.
Q. 7 What was your dress like, where did you find it, and was it a certain way to accommodate you?
I got my wedding dress from JuneBridals.com. It was the only place I could find the wedding dress I wanted – none of the bridal stores in town had the bohemian/fairy tale style I wanted, or if they had it, it was WAY too expensive. I found a beautiful dress that I love for $200 from JuneBridals.com. It didn’t fit perfectly (even though I put in my measurements prior to placing the order), but it worked out really well. My mom had to modify it a little in the shoulders to make it fit a bit better – I have very slight shoulders which makes it hard to find dresses that fit anyway. Not sure if that’s from the hEDS or just my skeleton!
Q. 8 What are 3 things you would like a wedding vendor to know?
I would love wedding vendors to know how to work with a couple to create a calm, small, intimate ceremony. I didn’t get the impression that I could have that with any of the vendors we looked at. There were too many details, the guest minimums were huge and it all felt too commercialized.
So I guess the 3 things I’d like vendors to know is that not all brides want everything 1. overanalyzed and over-planned, 2. HUGE, and 3. Commercial. I just wanted a beautiful space where someone else took care of the decorations, and I could show up in my pretty dress, commit my vows to my husband, and then kick back and enjoy celebrating with a small group of people whom I love.
The Spoonie Bride Project, my largest social media project to date, has not reached a road bump or a stopping place. I am in the process of interviewing 3 Spoonie brides and will hopefully have their info by the end of the week.
I am very excited about all of this. Wedding planning can feel so lonely – especially when you have a chronic illness or disability – and I hope the Spoonie Bride Project helps alleviate that.
Part of the project is to help vendors understand the needs of this base of their clientele. The 8 questions include the final, “What would you want a vendor to know?”
Today please enjoy Holly’s wedding story on Pink Fortitude. She shared it with me and it is a beautiful story. Do enjoy.
Want to be part of the Spoonie Bride project?
Contact me at email@example.com with the title “Spoonie Bride Project [insert your condition here]” and we’ll get the ball rolling with your interview!
I was diagnosed shortly after my engagement to Bear, and whenever I looked for help or advice on your typical bridal forums or websites (such as The Knot or Wedding Wire) I was always called a bad person or shunned. I was even told I had lupus 3 days before my wedding!
The Spoonie Bride Project exists to be a single source of information for brides with any condition to come for information about their day. It also provides to serve as a source of confidence to say, “Yes, I have X, but she did Y!”
The information will start out as interviews on my blog as I like to have a daily blog post, but will later be compiled.
I will go back to usual programming eventually. But I do have several big projects looming on the horizon.
My groom came running into my bridal suite – that is, my childhood bedroom – screaming about how no one had the time to help him tie his bow tie. His father would be ashamed of him and give him a hard time. Never once did he call me beautiful, or seem in awe, and I had just gotten ready, makeup and dress. At the time it really hurt, but the ridiculousness of the bowtie situation is laughable now.
2.You Struggle to Fit in Your Dress… But You do!
This is every bride’s worst fear. It nearly happened to me. But I had… wait for it… Walmart Spanx on hand! They were super soft and just what I needed to slip into my dress.
I think the cheap Spanx is the best kind. I’ve had many throughout the ages and the best compression shorts (the kind I wear) have held up since 2014 and are extremely soft.
3.Your First Kiss is Interrupted
Babies crying, phones ringing… for Bear and I the doorbell rang with an Amazon package of our aisle runner (my family did my wedding by the seat of our pants) and our flower dog came running down the aisle barking!
4.The Music is Messed Up
Bear and I didn’t have the budget for a real DJ, despite me finding one, my parents are against real music at weddings for religious reasons; it really was their wedding anyway. They didn’t even want us to have a first dance! So we had an iPod DJ. My mom volunteered but couldn’t figured it out, so the ceremony was messed up until a college student family friend took the reins, then we had no music the entire reception, as is my parent’s religion’s custom. Finally we got to have our first dance despite some resistance.
5. It Rains on Your Wedding Day
It did rain on our wedding day! But we had gorgeous pictures. The lighting in the rain makes for the best photographs.
6. You Lose Your Day-Of Coordinator
Unfortunately, this was the case for us. It wasn’t her fault. My health took a turn for the worse and we had to reschedule the wedding; she couldn’t accommodate us. Spoonie weddings are hard to keep track of because they are so unpredictable, especially if the bride is a new Spoonie.
However, we ended up feeling the love from our community. This was a great gift.
Weddings can have all kinds of blunders, or “mistakes”, but they’re nothing to be worried about. None of them mean your marriage is doomed or that you’re not beautiful.
However, as a bride, you’ll quickly learn that your wedding is not about you – it’s usually about your mom, your MIL, your aunt, the groom… because after all, weddings are a team sport.
Keep that in mind, and also keep in mind that even the best of us turn into bridezillas.
It’s okay. Hugs to you, you’re marrying the love of your life!
I planned two budget weddings for the same man. The first wedding was our big 100 person shindig that cost us exactly $6,000. Then I was diagnosed with lupus during my first semester of graduate school and lost my ability to walk long distances. I had to go through the process all over again as I was forced by my family to have a home wedding. That wedding cost us about $500. Either way, they were far, far under the usual $30,000 mark most American couples spend on their weddings. The result? Bear and I were able to buy a house!
Tip #1: Shop Local
Leveraging your community is your biggest, most important aspect of budget wedding planning. By shopping local, I was able to:
Get specialized, custom Vegan Italian food from a local Mom & Pop restaurant for $13/head. My guests loved it!
Bought my wedding dress for $200 from a local Quinceanera shop after explaining my health problems.
Bought all my decorations in bulk off of Craigslist in my hometown (where my venue was) for $30 from a previous wedding which had also been held in my hometown.
My photographer gave us 50% off because we were locals (having the venue in the same small town she was) and not forcing her to drive long distances as a new mother with small children as most of her clients did.
My hometown venue was in a tiny small town with few hair stylists, and I got my hair done for $30.
Tip #2: Use What You Have
Does your family have tons of heirloom china and fancy cutlery? Use that instead of buying or renting plates and silverware! It’ll be a personal touch. It doesn’t matter if everything doesn’t match.
Does your family have heirloom crystal pieces? Hello, centerpieces!
Does your immediate family or extended family have land or a nice house you could use as your venue?
Christmas decorations can be repurposed for any time of year. My altar was created using tulle gifted to us and clear Christmas lights, as an example.
If anyone in your family has antiques they’d be willing to lend, ask and let them! Another part of our altar was an heirloom grandfather clock.
Tip #3: Let Your Friends Help!
This really, really should be the most important part of making your day go smoothly. During my planning process I:
Had my first 300 acre venue for a $60 deposit for a total of $600 for 24 hours… actually more like 48. We had been friends with the manager of the venue for 15 years.
Speaking of the venue owners, the wife of the manager and their daughter offered to be our wedding planners and day of coordinators for FREE.
Bear and I had wedding decorations gifted to us throughout the process.
Many of our friends volunteered to help set up for the big wedding.
During our small wedding, none of Bear and I’s mutual friends could make it because it was on a week day and it was short notice. But my old roommate and a family friend who were both still in college came and served food, drinks, cake, played music, and helped set up and clean up after the wedding.
My father being a Preacher had the church to borrow white chairs from for both our big wedding and our small 20-person wedding.
My dad being a Preacher officiated our wedding for FREE.
My old roommate was great at makeup and did my makeup for FREE.
Tip #5: Grocery Store Florists
In Texas, grocery store florists are nothing to be sneezed at. I don’t know what it’s like in other states, but my bouquet was gorgeous and our flowers only cost around $250. They came from a grocery store called HEB.
Now I’m not saying I bought the flowers next to the check out – most grocery stores have a floral department in our state with licensed florists that can make custom arrangements that are perfectly wonderful. Check with your local grocery store to see if this is plausible for you.
Tip #6: Gentle DIY
At my house wedding, all the decor was DIY. My big wedding was going to have DIY decor too from the prepackaged Craigslist decorations.
What I really want to stress here is that I had light DIY invitations – I bought these wedding invitations from Hobby Lobby for $7.99 at the time. I also used Canva to create menus, signs to put in frames, and styling to decoupage on wood for my big wedding’s rustic theme. Canva provides prepackaged free templates for all of these things. You can change the colors of the designs to fit your theme.
I say gentle DIY because you don’t want to go too overboard and stress yourself out. I was a grad student with a chronic illness. You may be that too, or you may have a demanding job and still want to have a life outside wedding planning.
Tip #4: Buy the remainder of what you don’t have from the previous tips online.
Did you know you can make lists on Amazon? Make an Amazon list for your wedding to get organized, and share it with your party. Add things to it, and slowly eliminate what you already have or is out of budget.
I ordered send-off bubbles, fake succulent table decorations, napkins, picture frames… not a whole lot because I already had enough. But Amazon has pretty much everything.
…and don’t let anyone scare you out of it or change your mind!
Not your groom.
Not your mom.
Not your MIL. The biggest takeaway here is before you start planning or buying a dress, know your theme, know how you want the wedding to look like. Make that Pinterest board proudly. You can make that classiness happen on a low budget, girl. You can make anything happen if you stick to what you want. Your vision will guide your choices so your wedding won’t end up a huge mess – or over budget from making mistakes because you didn’t know what you wanted. Ultimately though, it’s really about marrying the love of your life.
Even if your wedding gets derailed by everyone in the whole universe, you will have your person. Remember that.