Am I disabled?

[@Mustbehel]

It’s been really revolutionary for me to hear that having a mobility aid allows you to push yourself further - I’ve been assuming that my vague urge to get a mobility aid is borne out of an urge not to extend myself (that boring, old, ableist, self-punishing assumption.) But you’ve turned that idea on its head! Thank you!

[@stevie]

Mobility aides give you MORE freedom they don’t restrict!!! When I realized that it completely changed my life! There are obviously exceptions because of inaccessible buildings, but my chair has made me MORE active not less!

[@lauravanimpe3173]

If more, mobility aids can push you too far! My first year with my wheelchair was wild. I wanted to go everywhere and I completely burned through energy I didn't have. As of now I'm still learning to deal with this new found freedom. But it's so worth it!

[@Eloise_Please]

I'm so excited that you're making more disability content! Thank you for doing what you do, and spoonie solidarity 🥄🦓

[@DB-sc2hg]

It is hard to know what to do sometimes, but usually asking is the best thing to do when you don’t want to make the disabled person feel uncomfortable. You are such an inspiration for disabled and able-bodied people. Love your content.

[@cynhanrahan4012]

I schedule in rest. When I need to leave the house for say a Dr appt I know it will be stressful, I know the light and noise will be miserable, and I know I will have to be nice 100% of the time and/or not cry, I need a nap when I get home. When I have 2,3, or 4 of these appts in one week I'm careful to only schedule one a day, but also then two full days of bedrest except to take my dog out. My energy gets so low I will sleep 12 hours, go to the bathroom, drink some water and then sleep another couple hours. 2 days in a row. I depend on delivery services for most of my shopping. I cancel social plans if I just can not do it. It's gotten me ghosted a lot. I want mobility aid so that I can do more things independently, and actually walk my dog on days I can't. Thank you for helping me spin my disability into something that is just part of me, and not something I need to just try harder to get past.

[@marsha831]

Important to believe when a person tells you their needs. They have experience living in their body and know what works for them. Also, don't assume - ask.

[@MinimumGnome]

I never let someone give me a hand up. I trust furniture or my cane, way more than another human.

[@shirleydietsch1279]

Thank you, Stevie. This is quite an eye opener for me. I really appreciate the education. To look at you, no one could realize what you go through. I know your wife is very supportive too.

[@Phoenix-yl3go]

So glad you started doing disabled content! I have several invisible disabilities and I’m physically ambled so I have a hard time accepting that I am in fact disabled too. Even though I literally have an assistant dog to help with a few of my disabilities. Being someone with a learning difference too, I actually had to stop going to school (and as a result) didn’t finish my formal education, which isn’t a small thing, but ist is something that happened as a result of one of my disabilities. Just felt like sharing too. Thanks for sharing Stevie (if you actually see this).

[@Phoenix-yl3go]

Sorry for the typos, I meant ‘abled’ not ‘ambled’ but my iPad won’t let me edit it. 😂

[@fictionalhuman]

I don’t carry or pour heavy things…like pots/pans of food. No, I cannot hold that bowl with one hand to scrape in the brownie batter with the other.

[@Lichtenfine]

Sad to report that having a huge cushy butt does not prevent my legs from going numb😅 chairs are the worst!

[@moniqueleigh]

Same. Sad when you look in the mirror and acknowledge that you have plenty of built-in cushion and YET... Yep, that chair with the hard seat (or the ridiculously thin cushion) is going to leave you in misery if you sit there longer than five minutes.

[@stevie]

Oh my goodness really????? My poor flat bum has taken the blame for too long when it was really the fault of my arch nemesis: the chair.

[@moniqueleigh]

@@stevieHonestly, I don't know how even abled people can stand those things. (And then I see descriptions in furniture catalogs & the like calling them "comfortable" -- HOW?) Even when I was young and able (before the genetic issues really started making themselves known), I hated chairs that had no cushions. And there is a special place in the middle of a volcano somewhere for makers of cushions that are so thin as to be pointless.

[@Jazzy.girl.Sarah2023]

Can confirm also that having cushion on my bum doesn't keep my legs from going numb either.

[@oli_kate]

Yeah my legs go numb also :( Many parts of my body go numb in different ways from various types of sitting.

[@fictionalhuman]

Oh, also, stools everywhere in my house! Kitchen gets a stool for cooking, bathroom gets a stool for washing hands/brushing teeth, laundry room gets a stool for loading washing. I must perch!

[@emporesszia]

I'm having a bad episode right now - I have cellulitis in my left thigh and every, I mean everything is a struggle. Sitting hurts, standing hurts, lying down hurts, walking hurts. Everything is exhausting, too. I'm 5 doses in my my round of antibiotics, so today has been a tiny bit better than yesterday, but I overdid it this morning trying to get some laundry started. So I asked for help! I am lucky to have a great partner who is always willing to help me. Monday on his way home from work, he picked up my antibiotics at one store, then went to another to get the only few things that sounded good to me - stuff for grilled cheese, peanut butter, and Lipton Noodle Soup - it had to be Lipton! He made me food and brought it to me. Yesterday he picked up a few other things that sounded good. Tonight food is starting to sound better, so he's getting Wendy's. I also have fibromyalgia and get migraines. Mobility aids help me, too. Sorry for the ramble!

[@t.kruste3085]

Hang in there! I'm glad you have that support

[@hxctalent]

Epileptic, intractable: the ear plugs and sunglasses indoors are the biggest flex. The highly fluctuating BP is scary, trying to manage that, but you just gave me a reason for being the "grabby claws"

[@OurGalaxieSystemIsQueer]

I also do the trick of sitting instead of bending over. And when I do have the energy to cook, I make a huge amount of the food so I can have leftovers while I recover from cooking for a few days. I also only shower once a week because it takes so much energy to shower. I just use baby wipes the rest of the week to stay clean. When I was more disabled (I have Lyme and used to be a lot sicker) I would use a power chair in order to get out and be in the world sometimes when I could leave my bed. Love this video! Pretending to be royalty instead of disabled is fun.

[@stevie]

Yessss! Okay okay for the shower baby wipe thing….you should look into “no water” products! They’re called no rinse, towel off, etc. They have shampoos and body washes and soaps and they’re for people who have limited access to water or people who spend time in bed a lot or even people who have sensitivities like allergies to hot water or sensory issues like autism! Could be an absolute game changer for you!

[@OurGalaxieSystemIsQueer]

@@stevie that’s such a good idea!! Totally going to look into it. Thanks!

[@eyeseajujubee]

I love this reframing of disability. I was so anxious/ hesitant to start using a cane for my visual impairment, but now I can cross the street at night by myself and have more autonomy/freedom.

[@joellebrooke42]

I refuse to lift or hold anything above my shoulder, I refuse to sit in the backseat of a vehicle, and I refuse to use another person's washer and dryer for my laundry if they regularly use scented or dyed laundry detergent. I also refuse to eat most foods people offer me. All refusals are for separate conditions that my body has 😅.

[@stevie]

Yessssss! We love firm boundaries in this family.

[@sarah30932]

I’m trying this new thing where I actively try to dis-associate with anyone who doesn’t believe my symptoms or how my life actually is Yes it was a good choice lol

[@achookangaroo]

I never sit in a chair with both feet on the ground. Ever. I don't carpool places. I gotta be able to leave when I need to leave. Full stop. I also drink solely out of my water bottle. Always. Even at restaurants.

[@achookangaroo]

POTS, for anyone wondering or experiencing similar things. Gotta keep those electrolytes going!

[@garyt4394]

Knowing, at all times, where the nearest loo is.

[@GM-pn2bi]

I actually had someone seemingly genuinely asking me if I was a famous person one time. I can only assume it was because I had awesome hair and was wearing sunglasses inside at night lol.

[@linneawellmar331]

Thank you for sharing Stevie

[@terryenby2304]

I enjoy watching KZbin videos in bed, and have little stations in the two places I sit in my home with sick bags, wipes, snacks, water, chargers etc. So all I have to carry is myself and whatever device I’m using to my recliner or to bed, and then plop. Advice to my former self: use tools BEFORE you think you need them. Because after you are exhausted is too late. For example if I think crutches might work, but a wheelchair would be safer, it’s ok to pick the wheelchair, even if crutches are fine for the first five minutes !!

[@HealingInsideMyMind]

Stevie I have forgotten whether or not you have a stair lift at home, If not, you should have one installed.

[@stevie]

If you mean a stair lift that you install on your stairs to take you up them…I refuse to live in homes with stairs! So bungalows or lifts or ground floor for me always!

[@HealingInsideMyMind]

@@stevie Understandable love!

[@Mojohjohjoh]

I have a walker and walking stick but I rarely need to use either of them. 2 weeks ago my brother had a destination wedding and I brought them 'just in case'. Well the people in the airport saw me coming and we were escorted (with me in a wheelchair) through all the fast track lines. I did have a flair halfway through the trip and needed my mobility aids so I'm grateful that I brought them and I was treated so well by everyone involved

[@oli_kate]

Thank you for making this. I knew you were disabled but I didn't know you used a wheelchair and it's just so great to see more people using mobility aids!! Also good for you and your boundaries. My biggest accessibility thing apart from mobility aids, is that if you don't provide me seating I will be sitting on your floor and there is nothing you can do about it. In fact I may lie down on your floor (people really don't like this). I also have gotten way less awkward about asking for help. Like I just had to get over myself a bit the more disabled I got. I will be asking someone able-bodied to get me water or a jacket or whatever. The only thing I haven't been able to manage is when old people want my seat, I don't know how to say no. But since I have gone to less family gatherings then I don't have people just "forgetting" I'm disabled anymore.

[@emoryrubyg9631]

The biggest thing for me has been speaking up more about my needs. Before I always felt guilty that others would have to accommodate me and I would push myself sometimes to my own detriment so that I could pretend I was just like everyone else and don't have medical conditions and limitations. But now, I know my limits and I'm not afraid to voice them anymore. I'll bring my own snacks when I go out to ensure I have food to eat. I carry ear plugs with me everywhere too. I'll sit when I need to and only go to places that have enough available seating.

[@t.kruste3085]

I always know what geographic direction a train/bus/car is going in and which side (in case of train) is the front because I refuse to sit on the sunny side or backwards. I also always carry earplugs and make sure a screen I have to look at is close to eye level

[@LilDinoGuy]

Huh. I’m not sure whether it’s actually an EDS thing or not, but I absolutely bleed every time I clip my nails and they’re sore for the next several days. But maybe I’m just bad at nail clipping lol

[@stevie]

Omg!!!! I did recently see someone talking about EDS nails being more flexible so nail polish dries slower? Where are they bleeding? Do you cut close to the hyponychium?

[@LilDinoGuy]

@@stevie I definitely do cut my nails pretty close, so I’ve always assumed I’m just doing it wrong lol And yeah, they bleed at the hyponychium, which makes using my fingertips pretty painful for a couple days.

[@Mad_Resilient]

I no longer (haven't for at least a decade) cut my finger nails, I file/fight them for about half an hour. This does mean I need to do it more often I think/feel & I have someone else cut my toe nails (no strength or control in my dominant arm/side)

[@Jazzy.girl.Sarah2023]

I have to rest in between tasks to conserve energy. I have to use walking poles. The poles help me walk farther than I can without them.

[@SteinGauslaaStrindhaug]

I've found that if I need to scootch or get out of bed from the end (because our bedroom is smal and I have a lot of crap stored on my side), the least likely to injure myself way of shifting my weight with my hands is "walking" on my knuckles (like gorillas do). As long as I balance on top of my fist so my wrist doesn't buckle, I rarely dislocate any fingers this way. It's especially important to do so whenever I have a hand wash injury. (If I'm not careful I easily dislocate my pinky when I rub my hands together)😅

[@RandomFandomXYZ]

Elbow ass 😂. Now I know what to call mine! I have to take a cushion with me all the time as sitting on hard chairs is agony.

[@KevNpton]

I have long covid, but can do a really good impersonation of a well person. I can do things for a while, but the more intense it is the shorter time period, and I’m always looking for where I can sit down. I’ve had some neck operations and was told I can’t pick up anything heavier than a kettle for several weeks. I got defeated by stiff doors a few time, try to open it and the neck says no, definitely not.

[@eveem7197]

At like family events etc I'll interrupt the beginning of a conversation with "hey let's go sit down" I feel like people just think I'm really into chatting with them

[@stevie]

Yesssss I do this!!!

[@vynedvyne59]

Oh my gosh that bit about seating….😂YES YES what the F🎉❤😅😊

[@bethanykennedy812]

I don't stand in line if I can help it. And when I do, I dance. I think my ADHD compensated for my POTS for years before I knew about either of them.

[@callmelivy]

Small thing but I bring a squishmallow on flights/to airports. Serves as comfort when I'm anxious and then a pillow once we're cruising and I can sleep 👍 I've never had any flight attendant question it even though I always have a carry on and personal item too.

[@Jazzy.girl.Sarah2023]

We have stools all over the house as well. Helps me be able to sit while working on a task so I can save energy.

[@bioluminescentlyunfolding5716]

My thing is that I try to avoid kneeling; my knees just really don't like it, for reasons that have never been explained. In recent years I've tried to do it a little bit more, because it kept coming up in pilates as a thing that had to be done, and I thought maybe I could improve the situation, but I must say that trying to get used to it doesn't really happen anywhere outside of pilates classes...

[@TarynRMartin]

A lady must never bend further than a subtle curtsy. (Also, I might knock myself down on my butt.)

[@hibouwolf571]

I got rid of my computer chair and put an armchair with an ottoman at my desk. I also have a water cooler by my desk so I have access to all the cold water I want without having to get up (otherwise I would have just gone thirsty in the past). I use disposable cups plates and utensils because doing dishes isn’t a thing I can do. A shower chair with the hose type of shower head is essential! I also got a rolling drafting chair for my kitchen so I can have a cushioned seat with a back that’s tall so I can have access to the counters. I also trained my dog to pick up trash off the ground for me and she’s very good at it! I’d really like to have my own mobility aid, I use those scooters at grocery store when available, but I do get scared of being stranded in public and having my own mobility aid like a power chair would help a lot.

[@MossyBear]

kitchen chair, my beloved 🙏

[@rickruch3487]

I am disabled too your georgus

[@bioluminescentlyunfolding5716]

I think the pill popping thing is just because we pop out more pills than non-disabled people, so the odds go up of the nasty little bit of foil sliding the wrong way. I've been there a few times, and it's a hideous experience. :X

[@Rainbowpink05]

Thank u 🙏 for this

[@JustmeNici]

So I'm part of the patients association for people with EDS in The Netherlands and they had a recent article about research on the genetics behind hEDS. They're predicting that the outcome will be that there are way more than 1 or 2 genetic anomalies that are currently under the name hEDS. I'm like so fucking sure that you and I have different types cause like yeah I relate in many ways but also dang I have it so easy compared to you. Yeah my joints dislocate all the time, but I'm literally an acrobatic gymnast and a gymnastics coach and an English teacher and even doing all that I'm not struggling nearly as much as other people with EDS seem to be. People are having such a rough time and I'm complaining because I have to have some random ass surgeries every once in a while because my organs are a little wacky 😅😅

[@nanas.grotto3091]

yes i love this i call my disability parking spots my priority parking

[@ketrakrelek2347]

I press the button to cross the road with a bent finger using my first joint because if I press hard with a straight finger the end joint bends uncomfortably - it doesn’t dislocate I think but it does hurt a bit. Similarly I punch those big buttons to open powered doors with the flat of my fist so I don’t bend my fingers back too much. Am I diagnosed with a hyper mobility issue? No but that is probably because I can still function relatively easily

[@granddpa]

you are such a super person with a disability you can go out and be someone who is verbal about what you want I'm in a wheel chair that is powered by a smart drive, when I got my chair 3 years ago they would not get me a power chair so they got me one cost 6500.00 us dollars yes it is great but my wife who also has disabilities cannot put my chair in the car so we had tto get a transport chair (it sucks) now the decided to get me power assist for it that cost still another 6500.00 us dollars. and I still cannot get out on my own. At the end of this month I'm going in to have a BOSTON SICENTIFIC PAIN STIMULATOR put in my spine to help curb the pain I have and the numbness in my legs .I know how hard it is for my wife to have to do everything for me I love her so and I know the love for you pardner .My prayers are with you daily you are a brave woman

[@SoliRhymesWithJulie]

Because of patellar instability (aka knees not quite in the right place so one tiny wrong move and a knee goes out) I no longer walk down stairs like a normal person. One step at a time, both feet on it, then the next step. Oh, and walking at an angle while doing this.

[@norseczar27]

AMAZIN

[@ajaxashford4815]

Confused is so many ways

[@mb31415]

Girl YES, for me it’s that I’m always carrying a purse. So ladylike. You need something? Odds are I’ve got it!

[@viviansollid3907]

I have a big, juicy, fat ass, and my legs go numb too 😂 Usually I'll just stay in my wheelchair, it is more cushiony.

[@ketrakrelek2347]

I have a very padded butt and if I sit down too long on something hard I get numb legs anyway lol and that includes sitting on my bed loll

[@GirliestMammy]

💖

[@fishfish7985]

Blister packs hurt my hands

[@mariebourgot4949]

❤

[@iampinktea]

Could you maybe do a video like this on disability + sex?

[@tablelamp801]

Am I disabled? Am I a Nicky fan???

[@marcopolo2874]

In the short about hanging art on the walls you jump down on the bed

[@stevie]

I’m not sure what you’re trying to say with this comment, but when I jumped down on the bed in that clip I immediately regretted it and had a painful spine for 3 days hahahahahahaha

[@GregHanes-z6z]

It’s actually incredibly offensive to claim to be “disabled” when you aren’t.

[@stevie]

Statistically there are WAY more people who are disabled and do not know they can call themselves that than there are people faking disabilities.