I went into the doctor’s office - they gave me a blood glucose meter and showed me how to check my blood sugar. It was 374. Normal blood sugar should be around 110. Well, my blood sugar was so high, and I was so panicked that I passed out in the doctor’s office. My doctor called to get me a spot in the Emergency Room (ER). On the way to the ER, I had to call my dad to tell him the news. We were all in shock. I stayed in the ER for a couple of hours, and they gave me insulin and fluids.
Fast forward to today.
My A1c is 5.6, it was 12.2 when I was diagnosed. I’m on a T-slim insulin pump and a Dexcom. I had no idea what all went into being diabetic, so I try to advocate for diabetics and other people with chronic illnesses. We go through a lot, and you never know who has a chronic illness since most are invisible. But we are STRONG and BEAUTIFUL, and together we are UNSTOPPABLE.
By not making my size, adaptive brands limit what I can do and where I can go. And that’s worse for my health than my extra weight and more restrictive than being in a wheelchair in a non-accessible world.
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As a fat, disabled person, I came into sewing for two main reasons: a hobby for my good days that made me feel “useful” (awful capitalism), and a way to have access to garments in the style and fabrics that make me happy. I constructed my first garment in March 2020 and have made enough garments in the past year to now feel comfortable taking on larger projects.
While plus-sized clothing and patterns are becoming increasingly diverse, properly fitted, and readily available, unfortunately, part of the plus-sized community is left out entirely. Folks like myself who have accessibility needs don’t have access to plus-sized adaptive clothing and patterns.
With nearly 1 in 5 adults worldwide living with a disability, the adaptive apparel market is large and growing. Adaptive clothing is designed to make it easy to dress and undress for folks who have mobility difficulties due to age, disability, or other causes. Unfortunately, despite the adaptive market’s advances, disabled customers' needs are still not being met.
Most often, adaptive clothing is designed for comfort in a seated position. Some examples of ways to achieve this include:
There are also adaptive garments designed to be easy to put on without raising your arms or legs. Some examples include:
Some adaptive clothing is designed to make it easy for a personal support worker or family member to change the garments of their family member or patient easily. These garments can use any combination of the above adaptations to accommodate the disabled person’s specific abilities.
Other adaptive clothing fills a medical purpose, such as allowing lines in and out of the garment for feeding tubes, ostomy bags, insulin pumps, and other medical devices. These types of clothing are called stoma clothes. In addition, supportive stockings, socks, and legwear prevent swelling and blood clots in individuals with poor circulation.
I started looking for my own adaptive (and medically necessary) clothing when my doctor suggested compression socks and legwear to ease my legs' swelling from being seated for long periods of time while using my electric wheelchair. When I could only find ready-to-wear garments that were at most several inches smaller than my measurements, I figured it was no big deal. I would just find patterns and make them myself! I knit, crochet, and sew, so I just thought it would be easy to find a pattern for at least compression socks in one of those mediums; I was wrong.
After several days of searching through my local library’s online catalog, and searching online bookstores for anything on adaptive/medical garments in plus sizes, I was shocked to find that nothing was available in my size or style, for that matter. Everything targets folks of *ahem* a certain age. My only findings were a few shapeless cotton-polyester house dresses. The only adaptive clothing sewing resources I could find were young children’s clothing, which would not scale appropriately for drafting up to my size.
The only DIY option for adaptive apparel of any kind in any size range was the website SewWhatAlicia.com
This website is a blog written by a mother whose son needs adaptive clothing. She uses ready-to-wear garments and makes alterations to them to adapt to her son's wheelchair use. This option is great in a sense but is also limiting and assumes that there are ready-to-wear options available in the size, color, and style preference of the person with a disability. As you may know, with plus sizes, this often isn’t the case; garment selection is already limited significantly in that size range.
I made a plea to the plus-size sewing community in May 2021 via a guest blog post on @fat.sewingclub. I didn’t expect much response, particularly when my blog post was on a niche topic compared to the other posts about fat beauty, fat acceptance, and sewing for plus-sized bodies.
Within 12 hours of the post going live, I received an onslaught of messages from the fat sewing community. They told me that this was not a problem I should be bringing to the fat sewing community. I should draft the patterns I needed myself or grade them up from the small number of existing children’s designs. I was being called lazy, needy, and pathetic.
I was heartbroken and angry from these responses. I knew that the fat sewing community had received the same reactions from large sewing pattern companies in the past when they asked for inclusion in their size ranges. However, I couldn’t believe that they echoed these responses at a fellow community member asking for help! So, I responded publicly on my Instagram stories and voiced my disappointment and that the responses were not only rude but incredibly ableist. As a disabled person with limited abilities and increasingly finite amounts of energy, how could anyone expect me to design, draft and sew my own clothing entirely from scratch?
Leila and Jess from Muna & Broad is an indie plus-sized sewing pattern company. They rose to the challenge and added an adaptive envelope back on their Tarlee T-shirt and made a commitment to include an adaptive back to all future shirt patterns that don’t have another opening on them.
A member of the fat sewing community, @adifferentstitch, compiled a spreadsheet of unintentionally adaptive patterns for the community. She sourced many of her patterns from unexpected resources - burlesque patterns, maternity patterns, and nursing patterns. This spreadsheet is still available on her link in bio on Instagram.
I have reached out to every adaptive ready-to-wear clothing brand I can find, asking them to increase their sizing into a true plus-size range. Overall their responses have been disappointing. I’ve been advised that there isn’t a sufficient market for plus-sized adaptive gear or that they already have too many products to try and sell to a small demographic. The worst response that I repeatedly received was, “We as a company value health and do not want to promote obesity.”
I wrote long emails to these brands, giving them the benefit of the doubt and hoping that they meant well. However, I refrained from calling them out on their fatphobia. I didn’t tell them that their views on health and size reinforce colonialism and have roots in anti-blackness. Instead, I appealed to them using their own argument- clothing equals access to activities that benefit the health of the disabled person.
You see, there’s a bunch of activities I can’t do, and it’s not because of my wheelchair or my weight.
A black-tie event? I have nothing to wear.
Dogsledding? Nothing to wear.
Going outside during a rainstorm? Nothing to wear.
Deep-sea SCUBA certification? Nothing to wear.
Attending a wedding? Nothing to wear.
Building a wheelchair-accessible snow fort with my nieces? Nothing to wear.
I would love to do these activities. They’re fun and probably would be good for my physical and mental health. So why can’t I do them? I can’t do them because clothing, equipment, and gear don’t exist in my size, all because designers don’t want to make it in my size.
By not making my size, adaptive brands limit what I can do and where I can go. And that’s worse for my health than my extra weight and more restrictive than being in a wheelchair in a non-accessible world.
But maybe that’s the whole point. They would rather tuck me away. I’m a reminder that health is fragile. And if they only make clothing and equipment for what they’ve determined as “healthy” bodies, then they don’t have to think about it.
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"My name is Lolly. I’m 21 years old, and I have Crohn’s Disease. Crohn’s Disease is an auto-immune disorder in which the body attacks tissues predominantly (although not exclusively) in the bowel. I have spent 5 years dealing with this chronic condition. At the beginning of this year, I underwent life-changing surgery to form a Colostomy."
Like every bored 20-something year old, I shamelessly love to spend a rainy afternoon flicking through Tinder. As you can imagine, this has recently become a little bit more difficult for me. I chose not to put pictures of me with my colostomy up on my Tinder, out of fear of being judged and dismissed too quickly. But as I match and exchange a few opening messages, the inevitable question arises: “What’s your Insta?”
My heart sinks as I read this message, I was really enjoying the conversation, and now I feel forced to draw it to an end. I might post very openly about my colostomy on my Instagram, and I intend to continue to do so. But these photos are viewed by my friends as well as people who choose to follow me because they relate to my situation. Perhaps this person would follow my Instagram and think nothing of my colostomy bag. Perhaps they’d even think it was pretty cool that I was so open about it and realize it shows off a courageous side to my personality. But I’m just not sure I can take that risk and face the rejection if my next message goes unreplied to. I’m not sure I’m capable of being that vulnerable to a potential partner who hasn’t really gotten to know me yet.
This fear of rejection was rationalized similarly about a week ago as I made my way to Waterloo. Due to the weather, the trains were proving a nightmare. I eventually found myself on a train supposedly making its way to London. No sooner had it pulled away before it was grounded to a halt due to a train at the next station without a driver. Frustrated, I glanced at the rather attractive stranger sitting across from me, and we shared a look of despair. He asked my name, and we very quickly fell into deep conversation, and before either of us knew it, we had been talking for almost an hour. He invited me to get off at Clapham with him and go for a drink. I politely declined as my friend was waiting for me at Waterloo, instead giving him my number and agreeing to go for a drink later in the week. When he got off the train a stop before me, I was feeling pretty chuffed with myself. How often do we all see an attractive stranger on the train, wistfully plan our imaginary lives together, and then depart having never given each other more than a faint smile? Swiftly, panic sunk in. I realized I had put my full name in his phone, and without a doubt, he would now be walking home and putting my name into Instagram – and why not? We all shamelessly love a stalk. I tried not to overthink it and carried on with my evening.
Unfortunately, that’s where the story ends - I never did get that text or go for that drink. I realize there could be a million reasons for this I couldn’t help but think it was more than likely because of my bag. He’d been so keen on the train and then changed his mind so quickly. But I guess I’ll never really know why. If I’m honest, this affected me far more than I’d like to admit. Objectively this guy was no 10/10, and in hindsight, the fact he picks girls up on the train was probably a bit of a red flag, but just to not hear a word really sucked. While I realize not everyone will be okay with my bag and I cannot expect people to be, this was my first experience of facing rejection based upon it, and it really got to me.
I think the reason it hit me so hard actually links back to my Tinder experience. On Tinder, it’s very easy to swipe past someone based purely on their physical appearance- whether that’s the fact that you’re not into blondes or are immediately turned off by the sight of a colostomy. In real life, you get a chance to evaluate the person behind the appearance, find things in common, make a connection before deciding whether to pursue them or not. I’ve always told myself that if someone took the time to get to know me a little bit and we really got on well, then they’d probably see past the bag. Unfortunately, in this instance, that wasn’t the case. We both loved to surf, shared funny stories from our travels, and agreed that South Western railways were a bag of shite. Still, if I’m correct on my hunch about him seeing my bag, then our immediate rapport wasn’t enough for him to consider still dropping me a message.
I spend a lot of time talking about embracing vulnerability. Still, this experience has reminded me that doing so is not a simple choice but a process. As we all grow as people, we learn to embrace our differences and flaws and who is worthy of sharing those vulnerabilities with and who isn’t. For now, I’ve ditched Tinder, but maybe eventually, I’ll ditch the insecurity.
- Lolly
]]>According to Change.org, "Justice for George Floyd" is now the largest petition ever hosted on the site with 18 million signatures – and it seems to be working. The Police Officer who choked (and ultimately killed) Floyd by kneeling on his neck on a city street has been arrested and charged. As have his three colleagues, who stood by and watched as these horrific events unfolded.
But, there is so much more work to do. Put pressure on your local, state, and national representatives by signing these petitions. A number of them list the relevant representative's phone numbers and detailed scripts to follow so that you can further your impact.
Protect Black Voters: Fully Fund Safe Elections in the Heroes ActProtect Black-Owned Businesses in the Wake of COVID-19
Demand Racial Data on Coronavirus
Coronavirus: Demand More From the Government
Abolish Prison Labor in the USA
Ban the Use of Rubber Bullets for Crowd Control
Hands Up Act: Take Action Against Police for Shooting Unarmed Citizens
NAACP "We Are Done Dying"
National Action Against Police BrutalityWe know it's important to pair actions with words – especially when advocating for racial equality and disability rights. In an effort to engage in meaningful activism, we're making a commitment to use our platform to share more #blackdisabledlivesmatter content (in addition to our usual disability advocacy).
To start, here's our list of exceptional Black and disabled influencers. Are we missing someone who stands out for their advocacy and activism? See details on how you can suggest an addition to this list below.
Legal Scholar, Advocate, Activist (1988 - present)
In addition to many other things, Haben Girma is known as "The Deafblind Woman Who Conquered Harvard Law." Haben believes "disability is an opportunity for innovation" – a belief that lies at the very heart of what we, as a company, do. Haben's book takes readers on a journey through her adventure-filled life, from her volunteer work in Saharan Africa to climbing an iceberg in Alaska, proving that being deafblind need not limit one's interaction with the world. Her story and advocacy also highlight the important work that remains for us to move towards being a more mindful and inclusive society.
Image via habengirma.com
Author, Language & Literacy Scholar (? - present)
Shawn Anthony Robinson, Ph.D. is an accomplished researcher, author, and advocate. His work focuses on the intersection of race and dyslexia, including the impact of literacy and disability on Black identity. He currently serves on the Board of Directors with the International Dyslexia Association and as a Senior Research Associate with the Wisconsin Equity and Inclusion Laboratory at the University of Wisconsin-Madison. Follow Dr. Robinson here.
Image via drdyslexiadude.com
Rapper, Musician (1982 - present)
You may know Lil Wayne as one of the most influential artists of our time, but did you know he also lives with epilepsy, a neurological condition characterized by recurring seizures?
Image via Ramona Rosales, Rolling Stone.
Scholar, Writer, Minister (1974 - present)
Monica Coleman is a contemporary theologian and theology professor in California. Her website describes that "[her] strength comes from the depth of her knowledge base and from her experiences as a community organizer, survivor of sexual violence and as an individual who lives with a mental health challenges," namely depression.
Image via monicaacoleman.com
Rapper, Record Producer, Actor, Activist (1974 - present)
David Banner is not only a well-known rapper and music producer, but an activist and philanthropist, too. Banner even produced music for Lil Wayne, also on this list. Banner is known for his experience living with depression, and credits meditation for helping him find his way back to music.
Image via Instagram
CEO & Founder, Disability Activist, Social Worker (1938 - 2011)
Vilissa Thompson is the CEO & Founder of Ramp Your Voice!, a self-advocacy and empowerment movement for people with disabilities. She is a Disability Rights Consultant, writer, & relentless advocate. As a disabled woman of color herself, Thompson has become a leader in the movement to spread awareness of disabilities and disability rights, especially among the political community. Follow her here.
Image via Essence
Disability Advocate, Activist (1938 - 2011)
Don Galloway was a lifelong champion for Black and disabled individuals. Galloway worked at the Center for Independent Living in Berkeley as the director of services for blind people, where he advocated for racial equality and inclusivity within the independent living movement. He also conducted research on racial discrimination and the cultural and political involvement of African Americans in society, and challenged discriminatory laws barring people with disabilities from serving as government employees.
Image via Washington Post
Would you like to suggest a black disability rights advocate for us to add to this list? Email us at hello@abiliteeadaptivewear.com, including "Blog Suggestion" as the subject line.
Special thanks to BlackDisabledandProud.org, who originally compiled a more extensive list.
]]>EDS is a connective tissue disorder, and connective tissues are all over your body so it can affect any part of your body. There are 13 different types. I have the most common type, which is the hypermobility type, also known as Type 3. It mainly affects my joints and my digestive system. My muscles don't really have the support that they would have if I didn't have EDS.
What is an Ostomy?
An ostomy, also known as a stoma, means the same thing. It's a bit of intestine that usually sticks out of your stomach. So when you'd eaten and have to go to the toilet like a normal person, instead of having to go to the toilet, my waste empties into a bag, which I have on my stomach. At the moment, I always have a bag on my stomach. There are different types of ostomies. I have an ileostomy, which means my small intestines stick out of my body. Not the whole thing, though, just a bit.Most people who have an ostomy usually have it because of Colitis or Crohn's or cancer or various other reasons. I've got it because I couldn't eat solid food for a whole year. My digestive system pretty much shut down. My colon was paralyzed, and my rectum was prolapsed all over the place. Having the ostomy helped me eat solid food again. And now I have an ileostomy. The ostomy and EDS don't really affect each other too much. With EDS, the skin is a lot more stretchy and more fragile in general. So the skin around my stoma is still quite sore from the surgery cause it's just taking that much longer to heal, about two years now.
What does body acceptance mean to you?
It's not easy, but it's so worth it. When you totally accept your body, you're not afraid to do things that you want to do. You can go to the beach, and you don't have to constantly worry about how you might look. It's about doing things that you want to do without your body holding yourself back because everyone's body is different. Um, Just because you may look like different from someone else doesn't mean that they're right and you're wrong. It's just different. And what does that mean? Unique is beautiful. So I think it's just accepting how your body is and not being at war with it the whole time.
Could you tell us a little bit about the 2018 Victoria Secret Protest in the UK, the whole mission behind that, and a bit of your experience being involved?
That was in December, back in 2018. It wasn't long after Victoria's Secret and their CEO said some really controversial comments about how they will never have anyone who is plus size on the catwalk, and they would not have any transgenders. So we thought that wasn't right. That was really insulting to a lot of people because not everyone looks like a Victoria's Secret model. So we ended up going to Oxford Circus. There was a little group of us, all completely different.
So we use the NüNUDE underwear, which is all just different shades of nude depending on your skin color. And we went into Victoria's Secret shop in Oxford Circus, and we just stripped off into these NüNUDE underwear and holding signs up. Eventually, we came out to the store, and as soon as we came out, there was a whole crowd just watching us. So we ended up making a bit of a photoshoot out of it, posing in front of it, doing catwalks in front of it. And then we ended up going to the center box of the circus, where there are really busy roundabouts. And we just kept running into the roundabout when it was safe holding up signs about why we were there. We're there to promote positivity and acceptance and to try and get more inclusivity into the fashion industry. And it went viral. Wow. It was amazing.
If there is one lesson that you've learned from all of your experience in life and you would like to pass it on to someone else that may potentially be in the same shoes or similar shoes, what would you share with them?
Whatever situation you're in, I think you need to keep persevering. Keep going cause...whatever's going on in your life, you will get there, and you will be okay. As cheesy and corny as it sounds, but you need to be kind to yourself and your body in the meantime because whatever's going on, it's not your fault.
This article was transcribed from an interview with Kimberly, and has been edited for content and clarity.
Hello! I am Kimberly Holiday Coleman, and I'm 52 years old this May 20th. Yay! I was originally based in Texas, and currently, I live in Kentucky. I'm a Stage Two Rectal Cancer survivor. I also am a writer, a burlesque performer, motivational speaker, international model, mommy of six, and a wife of almost 21 years in July. That's me in a nutshell!
My Journey with Rectal Cancer
I was diagnosed with stage two rectal cancer in July of 2015. I still remember that day. In January of 2015, I noticed that I just wasn't feeling well, feeling kind of off, lightheaded, and dizzy. Having symptoms like bloating, not fully voiding when I went to the bathroom, and just feeling off in my body. Then I got an appointment in March. I went into my gynecologist and told her what was going on. And of course, they kind of, "Oh, this is probably hemorrhoids," cause I had bleeding from my rectum too. They just attributed naturally to hemorrhoids, and she did a fecal occult stool sample test that came back negative.
And she said, "well, if it gets worse, just let me know." That was January to March of 2015. I monitored my symptoms, and I called her back after a couple of months and was like, "Hey, the bleeding has increased. I'm barely able to eat. I'm just not feeling right." She gave me a referral for colonoscopy and they got me in during July. I was 47 at the time. When I woke up from the colonoscopy, the doctors told me that he found "a fist-size tumor in my sigmoid colon and that he presumed that it was malignant." Those are the words he used. He never said cancer. My husband was there, and we were both like, "ahhh!" I just paused, and I was like, "Hey, are you saying I have cancer?" And he was like, "yeah." My whole life changed in that moment.
My whole life changed in that moment.
My doctor's bedside manner was lacking even after he said that. And I asked him the question to verify and validate for me that I have cancer. And he's like, "yes." I just got misty-eyed. My husband was crying, and the doctor just left the room. He was like, "well, I got to go set up your other referrals. Cause you know, you got to get you to an oncologist", and he just left us with this unknowingness of what we were just told with a void of no information, wondering if I was going to die from this. It was one of those life-altering diagnoses, you know, like when they say seeing life through rose-colored glasses, I literally felt like I'm filtering my vision in my life, you know? And everything changed after that.
What is an ostomy?
An ostomy is a medical device that is placed outside of your body, like generally on your stomach, above your pelvis, that collects feces so that you can no longer go to the bathroom to have a bowel movement through your anus. They reroute your internal plumbing (intestines) so that you can now poop in this bag. It's a life-saving medical device. I was only supposed to have it for six weeks initially because I had six weeks of oral chemotherapy combined with 33 radiation treatments to my pelvis. They were trying to shrink the tumor before they operated and removed it. They ended up over-radiating my colon to the consistency of tissue paper.
As I was resting up and waiting for my surgery, I actually had a bowel perforation and obstruction a week before my surgery date, and I almost died. I was rushed into life-saving surgery. Afterward, they told me that I would only have the ostomy for two years now. So it's gone from six weeks temporary to now two years. And I've actually chosen to keep it permanently now because life with my ostomy is fine. I just don't want to endure any more surgeries. As an ostomate, there have been a lot of challenges naturally. I have this life-saving device, and I'm still here. So I'm great!
Aside from your colon rupturing early, did you find the process of getting treatment for your cancer and having your ostomy affected one another?
They do affect one another because of chemotherapy and radiation. Especially with chemotherapy, it causes a lot of changes in your body. So now you have this rewiring of your internal organs. You also have this rewiring of your body cell structure, and they're almost competing for the healing process. So it was very challenging. I ended up being hospitalized quite a few times. I've had like a lot of blockages that were hospitalization worthy and almost had to have a second
surgery. It was a challenge, and no one prepared me for that. And I had no idea what to expect. No one says, "Hey, when you get this ostomy, there's other things that are going to affect this medical device and how your body processes things from now going forward."
How common is it to have cancer and an ostomy?
It's pretty common for people who have rectal cancer or colon cancer to have an ostomy. When they do an ostomy surgery, they cut out the diseased material and reconnect you with the healthy material. The temporary six-week ostomy is to allow the internal parts of your body to heal. Because otherwise, you can imagine trying to have a bowel movement through this freshly new incision. So they give you the ostomy as a way to give your internal organs a chance to not be used, to not have those spasmodic moments for something to pass. And so they rewire you in the hopes that internal have that time to heal. So it's actually pretty common amongst anyone who has colon cancer or rectal cancer.
To learn more about Kimberly, follow @kimberlyhcoleman on Instagram!
If you would like to share your story with us, shoot us an email at info@abilitee.com!