A house at night has a portable ramp set up on the stoop, shadows of people are inside the house partying

Celebrating the Holidays and Special Occasions

Last updated: January 2023

We asked our patient leaders about how they celebrate the holidays: Are there any special accommodations they and their family/friends have adopted to make special occasions easier? What is the biggest pitfall they’ve encountered? Here are their responses.

Portrait of SMA Patient Leader Michaela Hollywood

Gathering with my personal assistants

Michaela:

I always spend the holidays with my family. I am usually in charge of providing some nice desserts, so I spend most of Christmas Eve cooking up mince pies and cheesecake! For my family, it is about the tradition of swapping gifts and wearing cracker hats over dinner. I also love getting to sit down and watch some TV specials. But I do spend most of the day eating!

My personal assistants are all brilliant at helping me to wrap my gifts for my family without them seeing them! That was my biggest holiday pitfall, and I’m so glad they are on board with my Secret Santa mission!

I also try to have a gathering for my personal assistants where we all get to relax together. We have struggled to do that safely with COVID, but we hope to be able to do that again soon!

Portrait of SMA Advocate Allie Williams

Location, location, location

Allie:

The biggest pitfalls I experience for holiday gathering are location. Most of my family and friends’ houses are not accessible, they have stairs or narrow doorways that do not accommodate a wheelchair. The adaptations we have made for get-togethers have been simple, like using a piece of wood to get up a 6-inch step, or complicated, like moving the location to a barn with tons of space heaters for warmth.

I often will turn down gathering requests if the host does not know if the venue is accessible or not. Many times, I have had to explain true access because people have said "this venue is accessible except for just a few stairs." I miss out on events often because I cannot get into the spaces.

Portrait of SMA Patient Leader Suzanne Cutler

Portable ramp makes some gatherings possible

Suzanne:

We celebrate the holidays with Mike’s parents and mine. Luckily their respective homes are relatively accessible. We purchased a portable ramp a few years ago that has been a lifesaver when navigating a step or two. The biggest pitfall we encounter is steps.

Unfortunately, there have been times when we had to decline an invitation to a holiday party or dinner because there are too many steps to get inside the host’s house. When it’s one of my friends who is hosting a party that is not accessible for Mike, he always encourages me to go without him. He doesn’t like “holding me back,” so to speak. Sometimes I will go for a courtesy pop-in but I really don’t like attending without my partner.

Portrait of SMA Advocate Mike Noon

Putting health first

Mike:

Suzanne and I split time between our families. I always feel there tends to be added stress during this time of year. I find it funny that we put this pressure on ourselves to attend every holiday event. Unfortunately, those of us living with a disability can start to feel isolated. So when you are invited to a holiday party and you are physically exhausted, tell the host that due to your disability you can’t make it. However, you would love to see them soon.

Reach out to them when you are feeling better. It’s not always easy to put our health first. It’s our responsibility, though, to do just that. No one knows your body better than you. Don’t feel guilty for putting your health first.

Portrait of SMA Advocate Samantha Przybylski

Ask for help

Samantha:

Holiday preparations when you are in a wheelchair can be daunting. I feel like it’s hard when you have to ask for help with day-to-day life to add extra tasks on top of them. This year my sister was here for a few days and was able to help me get all of the decorations up. It was much earlier than I normally would decorate but it was so enjoyable to get to do it with her while we had time.

Don’t be afraid to ask for help or to do it when you can get it done. Holidays are usually spent at my house for me to be able to move freely about.

Foldable aluminum ramps and manual wheelchairs can allow you to function in homes that are not accessible. Having a travel Hoyer lift that can be easily transported in a vehicle can also make someone else’s house more accessible if you need to use the restroom or if you are spending the night and need to get in and out of bed.

Portrait of SMA Patient Leader Ainaa Farhanah

Look for accessible accommodations

Ainaa:

In terms of accommodation, my family usually will book different accommodations for us. It’s not easy to find accessible accommodation but we will book the closest one with the other family. In that way, I can just go back and forth without much hassle and save my energy.

I had this one incident that happened recently while attending my relative's wedding. Unfortunately, my access was denied because I used a wheelchair. The management asked me to change to the wheelchair they provided. Their reason was they don't want me to dirty the place. I felt mad and frustrated but I politely rejected their offer because I can’t simply change my wheelchair. My wheelchair has been designed according to my needs. The seating was built specifically for my body. There’s nothing much I can do. I ended up going home without attending the wedding.

Portrait of SMA Patient Leader Megan DeGarnett

Accommodations large and small

Megan: I love the holidays and celebrating with family and friends is a must.

I wouldn’t say we have made a ton of accommodations for me around the holiday season, besides the obvious of making sure I have a ramp to get into whomever's home is hosting. I feel like accommodations have been a priority since I became a parent, though, and that is to host the events myself or make the traveling very minimal. Traveling from house to house to go to different events was always my least favorite part of the holidays. So we have agreed to split them up and not make it necessary to travel to different homes in one day.

Other small accommodations we have made would include having glassware I can lift such as plastic wineglasses, foods I can eat such as mashed potatoes or very tender meat, and also some accommodations around game time. We always have fun games during the holidays and making sure I’m sitting next to someone who can assist me is a great accommodation to make it fair play.

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