Holiday Season has officially arrived. For those who plan on hosting holiday gatherings, this month we have a few tips that will help your chronically ill/disabled loved ones.
For my loved ones who may be reading this- most of these are accommodations I don't need (at least not yet) and when I do- I'll let you know ahead of time.
Unfortunately for lot of folks with disabilities and illnesses though, having theses kinds of conversations can be difficult if not impossible- even in close families or with close friends. So this December, we want to take a few moments to talk to all of the holiday hosts and hostesses out there. These tips will in no way be completely comprehensive, and if you're an able-bodied healthy person- the best way to make sure your gathering is open, welcome, and accessible- is to ask your loved ones what they need, without asking invasive questions about their specific health conditions.
In the meantime, some suggestions from your resident disabled holiday-lover...
1. Keep The Invitations Coming (with an available out):
-The truth is, illness/disability/pain means we have to cancel a lot. Many times, last minute. But being invited to events and gatherings anyway means the WORLD. Let us know we're wanted and welcomed- but that you also understand we may not make it, even at the last minute. "We'd love to see you, but if you can't make it just let us know and we'll try for next time, you're always welcome." This is something my family (in particular my cousins) have started saying with each invite and it's a really simple way for me to know that I'm welcome and wanted... but that they understand my realities too.
2. Ask Questions (without being invasive):
-If you're unsure of what your loved ones/friends needs are, ask! You don't have to be invasive or demanding. But a simple, is there anything we can do to make these gathering easier/more accessible/safer for you? Are there any big allergy triggers we can avoid? Believe it or not, lots of allergens are not super obvious, but can be deadly. For example, if you have a loved one allergic to latex, don't bring in poinsettias at christmas time (among other things). You don't need someone's full medical history to be accomodating, but even presenting yourself as open to our needs can make a big difference in our comfort at an event.
3. Home Hazards
-How accessible IS your home? If you have steps or stairs or high curbs- loved ones with mobility aids may not be able to get IN to your home. Many times, garage access is easier than straight from the curb parking. Take a look around at what obstacles there are to just getting the door. If you are the most regular family event host, consider looking into temporary/collapsible ramps to have on hand. If multiple family members live nearby, consider hosting at the most accessible home.
-When setting up extra tables for meals etc, consider how much space is needed for loved ones with crutches, walkers, rollators, or in wheelchairs to navigate around. Is food set low enough that (at least some of it) it can be reached independently for someone in a wheelchair? If someone will need assistance getting their food, make it a non-issue. It doesn't need to be production, a quiet, non-patronizing offer to assist is a lot less embarrassing than making a big production of it all.
-How accessible is your bathroom? If your home can be mostly navigated from a wheelchair, but your bathroom can't- it means making major changes to what can be done while visiting. Can't eat or drink too much if we know we'll have to get home before we can use the bathroom, or if we'll have to plan the trip home around finding an accessible public restroom. We know that making your bathroom accessible if it isn't already isn't feasible. What we need in those cases is for you to understand if we can't stay long, or eat much, or enjoy that extra drink.
4. Barring Accessibility- Embrace Non-Judgement:
-A lot of the things we do as people with illnesses and disabilities may seem... odd or even nonsensical. The ways we manage and cope with our conditions and an inaccessible world- may vary from day to day or visit to visit. Everything from how much we eat to how we get around to how often we visit the bathroom or slip away to a quiet corner to have a moment to ourselves- it all changes with how we're feeling, and we don't always know ahead of time exactly what we'll need. So be open, be kind, be non-judgemental.
The fact is, you don't need to know the why of what we do to manage our conditions. And if we feel like sharing, we will. But being an open and welcoming space, where are needs are seen and recognized- even if they *can't* be accommodated- can often mean the difference between us attending a gathering or staying home. This non-judgement extends to people's food and portion choices. It's not your business what, why, or how much your loved ones eat. Jokes about diets or food allergies or portion sizes or number of helpings are incredibly alienating- especially to those who may have unknown eating disorders, or issues with food due to medical restrictions or needs.
5. Let us Leave Early:
-Depending on who's hosting, I'll drive anywhere from 20 minutes to 2+ hours to celebrate with my family. That means that in addition to managing my pain and the exhaustion that comes with it- I have to also factor in a trip home. Driving myself, sometimes that means driving 2 hours to stay 1 hour, to drive 2 hours back home. Because on a truly bad pain day- showing up may be the best I can do.
It's lovely to express regret that we're leaving, that you hope to see us again soon- but making an extended production of it, calling attention to our leaving "early" turns something we likely already don't like (who wants to leave a good party first??) into a needle of anxiety and regret.
Appreciate that we came, let us know we're welcome, and then... wish us a safe journey home. Understand that our energy depletes much more quickly than a healthy, able-bodied person. Trust me, we don't like it either.
To our able-bodied friends and loved ones- most of what we need from you is your acceptance. To make whatever effort can be made to be accomodating and accessible, and for the rest- well, kindness and non-judgement goes a very long way. Being in pain, disabled, or chronically ill can be so incredibly isolating. Even if we can't make it, or know the gathering can't be accessible to us in ways we need- knowing that we're wanted and welcomed.... makes a huge difference.
That being said, in the ways you CAN improve the accessibility of your events... do it. Because being "welcomed" in a space that *could* be accessible but isn't - doesn't really mean that much in the long run. And of course, this is just... a short list, in no way meant to be comprehensive. What it should do, hopefully, is bring some awareness to the able-bodied folks that love us. To give you all a place to start evaluating what you can do to make us truly welcome in your homes, at your parties, for your gatherings. To help you create a space that really says, "we want you here."
And to our wonderful community- we know that so many of you will either be stuck at home over the holidays, or traveling to family who don't quite accept you or your needs. Who don't want the difficulty of making their spaces accessible for you, who may mock what you eat, or your need for a quiet space to get away from the action. For all of you- we see you. And no matter what your particular holiday situation is, know that you and your needs and accommodations are valid and reasonable. We wish you all the best holiday possible, and a peaceful end to the year.
THIS MONTH'S FEATURED SHOPS
CAMPAIGN(S) OF THE MONTH:
Normally, each month, we feature several fundraising campaigns. We like to share these links so that visitors who have the means know where need may be and can help folks in our community who are trying to get access to care or equipment they otherwise can't afford. Because there are so many folks needing help right now, we're going to start sharing a few campaigns a month- in hopes that we can help spread the love as widely as possible. If you are able, please consider donating to one of these fundraising campaign to help those who need it.
My smile has been missing
So. I'm going to let everyone know how my life has been since I was 18.
I moved out and lived on my own. I had no insurance because I didn't know what that was. I worked 3 jobs to pay for the 3+ years of college I completed. I still did not have insurance because none of my three jobs were full time and therefore didn't offer me benefits.
Major car accident, deaths of two pets that I spent all of my savings trying to keep alive.
Enter a "nice" guy, ends up abusive. Eating disorder develops as it became the only thing I could control in my life.
My teeth are ruined.
everyday I see them. They are a constant reminder of everything I've dealt with, and I hate it.
I took a spill last Friday because I'm a klutz, and hit my face on concrete.
My face is okay ☺️
My teeth are not. Right now, I have the two wiggly teeth from the fall (not that wiggly at all, but at risk of loss due to poor bone density,) all attached to one another from behind in order to try to stabilize them - it's called "splinting."
It's not comfortable.
Even with my "good" insurance, this is going to cost me way more than I can afford.
Heart Surgery Fund
I had surgery on Aug 22 & there were complications. I was put into a coma for 17 days. I’ve recovered as best as I can but the left side of my body has little sensation. I use a walker with assistance or a wheelchair. My left vocal chord is paralyzed from the trauma of medical tubes & I can only whisper now. My medical leave will be much longer now.
An estimated 10-day hospital stay turned into 2 months) and I’ll be running out of Paid Sick Leave by December but I don’t anticipate feeling healthy/strong enough for work until January or later. Please help me raise funds so I can spend time recovering - learning to walk independently again, going to my endless doctor appointments, and managing my pain.
*Please note, this fundraiser is a paypal chip-in fund*
Help with Trans Healthcare
My name is Blair, and I'm a 27 year old trans woman living in North Carolina. Being transgender means that the gender that was assigned to me at birth, the gender that legally represents me on official documentation, does not align with the gender I actually am. My assigned gender is based simply by anatomy, but does not reflect who I am inside. Dysphoria is the symptom of feeling uncomfortable with your body, gender dysphoria specifically referring to the discomfort with typically gendered traits that don't align with your actual gender. In order to combat this, I am seeking a medical solution.
I am currently in the process of HRT, which is the step of taking hormones, which for me means taking estrogen, anti-androgen, and progesterone. In terms of price, it all adds up fast. GRS is the most costly part. Gender reassignment surgery can refer to three different surgeries when it comes to someone who's AMAB like me: SCS (bottom surgery) for vaginoplasty, BE (top surgery) for breast augmentation, and FFS (face surgery) for facial feminization. I'm currently working part-time, looking for full-time, and uninsured in terms of health, so between living paycheck to paycheck and the general cost of those three surgeries coming to around $44,000 to $74,000, any help would be wildly appreciated! That's, of course, on top of generally living day to day, which is currently a struggle. Being a struggling millennial is already hard enough without being trans, so any support I can get from y'all would mean the world to me!
Help Me Get Around
I need as much help as I can get , I’ve a collapsed lower vertebrae and spend a lot of time in pain , I can’t bend so it’s hard for me to get around so at the moment I might leave my home once every 4-5 months for 2 hours if it’s a good day and struggle to get around with the crutches as I shake a great deal with them as I’m trying to walk or stand still .
I was in so much pain one day I just dropped to the ground and was bed bound for a week so with your help I’m looking to get a electric chair that i gan get on and off with little trouble and maybe one that will help lift me off this would be to help me get around and so I can feel good for once and stop giving people a reason to stare at me. For those who do help me I thank you a great deal you have no idea how much this helps and how much it will change my life.
Charlotte's Lightweight Wheelchair
Hi, I'm Charlotte, I'm 31 and I'm fundraising for a lightweight wheelchair that's more suitable for my needs.
I have multiple health conditions that mean my body really doesn't like me.. I suffer from EDS (Ehlers Danlos Syndrome) which means my joints are hypermobile - my shoulders, hips, knees and ankles dislocate on a regular basis (making walking or moving very painful and sometimes almost impossible). I also have ME (myalgic encephalomyelitis) which causes extreme fatigue with pain and Fibromyalgia (inflammation of the muscles and ligaments). I struggle with my mental health and see a psychiatric nurse weekly.
I take very strong controlled drugs four times a day, to be able to vaguely function.
I have been given an NHS wheelchair, it weighs 20kgs and isn't suitable. It's not designed for someone to be in it all the time, I can't get up or down kerbs and it doesn't fit through a standard door (it's 27"wide) which means I struggle to get in to most places. This is having a major effect on my quality of life.
Despite being stuck with a very uncooperative body, I'm a Girlguiding Brownie leader. I volunteer with a group of 7-10 year old girls from one of the most economically deprived areas (top 9%). Helping them learn life skills, make friends and be the best they can. I've also been fortunate to be chosen as a Network Coach, with the Action For Change programme that Girlguiding run. I'm helping young women to make a difference in the world, by coaching them to help them achieve their full potential and create a social action change.
The wheelchair I'm fundraising for is an active user chair, designed to be used full time, significantly lighter than my current chair( at 7kg), it's 3" narrower and I can pop a wheelie in it to get up a step!
This chair would mean I could get my independence back, I currently need someone with me all the time to get me up and down kerbs, into and out of places and to give me a shove when my chair gets too heavy for my shoulders.
Thank you for reading this far.. And if you can donate anything you'll have my undying gratitude.
I really want to be able to have a life!
If you can't contribute, please consider sharing any of our featured campaigns on your social media! Someone you know may be looking for a way to give back and could make a huge difference in someone's life! You can also look at previous blog entries to see if other featured campaigns are still in need of help!