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designer.mae

@designer.mae

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ND future OTD | disability justice advocate
🥄 narcolepsy x ADHD x OCD
fashion x function x access
📍 West Virginia | 🏳️‍🌈 ✝️

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And, that’s a wrap. 🎬 We’re one month past the eighth annual World Narcolepsy Day, and we’re so grateful for the community that gathers to celebrate and uplift each other every year.

Not only did we see #narcolepsy make headlines and orexin take the stage, but we saw record numbers of participants around the world stepping into the spotlight to share their own stories.

We are also so proud to have released a project years in the making, a first-ever report of its kind with the USC Annenberg Norman Lear Center (@learcenter @hollywdhealth) on narcolepsy representation in TV shows and movies. 🎥

From local meetups to online events, this World Narcolepsy Day was filled with real stories and true narcolepsy stars across the world. 🌟 See what everyone got up to: #WorldNarcolepsyDay

What story will we write next?

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chronic illness grief 🥀

grieving the you that was supposed to be
grieving the version of yourself you envisioned in your dreams
grieving as you stand still and life keeps moving without you
grieving the small things you took for granted
grieving the friendships and relationships that crumbled with your body
grieving the career you dreamed of, the hobbies you had, the life you envisioned
grieving not knowing a life without pain and symptoms
grieving what used to be
grieving the lost pieces of you, the ones you didn't realize you were losing until it was gone
grieving all the traveling and concerts and events you longed to go to
grieving the small moments, the laughs, the celebrations, the years you missed
grieving feeling like a real person and not a mere case number
grieving the life stolen from you by the chronic illness
grieving your inner child who is hurting and doesn't understand why the doctors aren't magically fixing you

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Bringing back institutions for disabled people is not the vibe… It’s actually eugenics in action, and we need to talk about it!!

If you need to catch up, on June 18th the DOJ released a memo arguing that states are not required to provide home and community-based services for disabled people. Then on July 20th, they confirmed through a clarification in the Federal Register that the Olmstead Guidance (the main legal protection keeping disabled people out of institutions) is no longer enforceable under the ADA.

In simple terms, the federal government is walking away from its commitment to keep disabled people out of institutions.  While the 1999 Olmstead v. L.C. Supreme Court ruling continues to remain binding law and has not been overturned. The stripping of federal enforcement means states can defund community programs without consequence. This is not a coincidence, it is a strategy.

So are we able to do anything? As of now, all we can do is contact the DOJ’s Disability Rights Section directly. You can reach the Director of Disability Rights Section & Civil Rights Division, Luis Perez, at 202-320-6683.

Your voice matters, so use it!!!

*Alt Text on Images & ID in Comments*

#DisabilityJustice #HumanRights #DisabilityPrideMonth #DisabilityRights #AccessIsAHumanRight Text on slide says, “For decades, disability advocates have relied on the ADA and the Supreme Court's Olmstead v. L.C. decision to protect the rights of disabled people to live in their communities rather than institutions.” Cutout photos of Livi, Cass, Olivia, and Grace smiling and having fun can be seen at the bottom of the slide.

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THIS is what I mean when I say I have an invisible dynamic disability.

Just because you see me posting pictures outside of my house and having fun, does not mean that there isn’t more going on behind the scenes. Personally, I know that I have a tendency to pull away and not share with everyone when I am struggling with my symptoms.

The truth is these last few months have been filled with some of the worst, most severe symptoms I’ve ever had. Which is saying a lot! I’ve been homebound for over a year and a half now, only leaving for doctor’s appointments and the handful of times I’ve pushed myself to go to an event (which each time causes my symptoms to worsen).

But just because I don’t share every aspect of my conditions online does not mean they’re not there. Social media only shows a small snippet of my daily life.

Video Description: A mix of different video clips of Grace, a young white woman, outside of the house and having fun. Along with in a hospital setting or in bed, symptomatic and struggling. Lyrics for the song show up on screen, “What you see, is not always, what you get. A lesson we must not forget.”

#DisabilityPrideMonth #BabeWithAMobilityAid #DynamicDisability #InvisibleIllness #MakeTheMostOutOfLife

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🫪🤧🫠
not feeling super patriotic for a country actively stripping away my and my friends rights, forcing the eugenics of the disabled people so I'm just gonna watch bravo and do a face mask ig
happy disability pride month

#4thofjuly #july4th #fyp #disability #disabilitypride

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But I mean truthfully, while we’ve made progress in the past, we’ve never truly stopped fighting for our rights. Whether it be for Disability, Civil, LGBTQIA+, BIPOC, and/or Woman’s Rights.

Disability Pride Month being in July as well, feels almost satirical this year considering the DOJ just released the memo claiming states do not need to fund community based care for disabled people just a few weeks ago.

Anyways, while it’s hard to be patriotic for a country that is currently spreading harmful rhetoric, let’s continue to fight for liberty and justice for ALL.

And Happy Disability Pride Month to everyone!!!

Video Description: Text on screen says “Being a kid in America these days means fighting for your fundamental human rights to not be stripped away from you.” Behind the text is a video of Grace, a young white woman, standing outside. She is wearing a black and white polka dot dress over jeans with black Mary Jane’s. Her wavy/curly hair is down, she is using a blue and green Vera Bradley purse, and is using a blue forearm crutch. It is a sunny day with green grass and trees in the background.

#4thOfJuly #July4th #DisabilityPrideMonth #HumanRights

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disabled and chronically ill people do NOT belong in institutions

the DOJ is trying to commit eugenics against disabled people, real. life. people.

Here's the scoop: on June 18th, the DOJ released a memo essentially claiming that states don't have to fund community based care for disabled people (i.e. home family caregivers, etc). this is undoing DECADES of disability rights progress. the ACLU states that this is completely illegal under the ADA (Americans with Disabilities Act).

the DOJ wants states to defund community based care programs to push disabled, chronically ill, mentally ill, etc people REAL PEOPLE out of society where they can see them back into INSTITUTIONS

this proves that attacking section 504 was merely the beginning of dismantling disability rights

learn more here:
@aclu_nationwide

⋆˚𖥔 ݁ ˖𓂃.☘︎ ݁˖
#disability #humanrights #politics ##explorepage ugc taylor swift sabrina carpenter olivia rodrigo noah kahan chronic illness chronically ill rare fyp for you

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✨cheers to my first year of OT school ✨ thanks to all my favorite people for getting me here <3

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A hot take of mine that may ruffle some feathers, but personally, I have never favored the ‘warrior’ & ‘fighter’ language when it comes to chronic illness and disability.

As someone who became chronically ill & disabled a few weeks after my sixteenth birthday, when the symptoms from my genetic condition undeniably began to impact my day-to-day life in a very significant way. I wanted to share my thoughts and feelings on this language from my own perspective.

Personally, I have never once felt that I was in some ‘battle’ with my conditions or body. While yes, of course everything I have gone through has been hard and I wouldn’t wish it upon anyone, I accepted the situation for what it was relatively quickly. I mean, I quite literally didn’t have a choice in the matter; it was either continue to live my life and meet my body where it was at or hope for a future that may never come.

To say I am a ‘warrior’ or ‘fighter’ with a chronic illness suggests there is something to overcome and persevere against. While in reality, even with the hope and possibility that treatments may advance or symptoms ease, so that I could have a sort of remission. No matter what, I will always have these diagnoses; hence why they are considered ‘chronic’ illnesses.

If you are someone who does find solitude and identity through terms such as ‘chronic illness warrior,’ by no means am I saying you need to stop using these terms. It is all up to personal preference, and just because it irks me doesn’t mean I believe others need to stop using it. But I also do not want people coming up to me and saying it either.

*Alt Text on Images & ID in Comments*

#HotTake #ChronicIllnessWarrior #InvisibleIllness #DynamicDisability #ChronicIllness Text on the slide says, “By no means do I feel like I am a “warrior” in all of this or that I am “fighting” against something that was going to inevitably happen anyway. There was never any “giving in” or “giving up” involved, only acceptance of the body I currently have.” The text is on cut-out pieces of paper. Grace is on the highest level of a parking garage, sitting on a yellow lamp post ledge. She is wearing a dark-toned floral jumpsuit with black boots. Her brown hair is naturally curly and down. A blue sky with white clouds can be seen behind her.

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I will always choose mindlessly watching medical dramas over actually living through them. 😌💅🏻

Video Description: Grace, a young white woman, sitting in her bed talking to the camera. She is wearing an oversized light pink sweatshirt that reads “I Heart Crashing Out” with light pink waffle-knit pajama bottoms. She has small gold hoop earrings and a dainty gold necklace on. Her dark brown hair is pulled up out of her face in a low bun. Blue satin pillowcases and her wooden bedframe are visible behind her.

#MedicalTrauma #ThePitt #ER #HouseMD #AbdominalVascularCompressions

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I especially adore when my midnight blue crutch matches the vibe of my outfit perfectly. 🤭💞

Video Description: Grace, a young white woman, standing outside with green grass and shrubs behind her. Text above her says, “Your friendly reminder that mobility aids do not ruin your outfit.” She is wearing a brown tank top paired with purple striped pants, an oversized jean jacket, and has on black shoes with white socks. She is using one dark blue forearm crutch and has a brown leather purse with a blue claw clip on the strap and a Dunkin Berry Açaí Refresher in her hand. Her brown hair is straight and down.

#BabeWithAMobilityAid #DisabledAndCute #OutfitInspo #DynamicDisability #Fashion

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Is the @Skims Team USA Paralympic Tank Top actually accessible?

This is the question I asked myself as soon as I realized the “accessible hook-and-eye closures” on their Cotton Jersey Paralympic Cami are actually super tiny hooks-and-eyes all the way down both sides of the top. Whenever I have seen adaptive clothing in the past, the accessibility options would usually feature magnets, velcro, zippers, and/or pull loops.

Because of the tight fitting nature of the cami, the tiny hooks-and-eyes are not actually accessible for people with dexterity issues and disabilities. Making it harder for individuals to put on and wear the cami, than if they had left this feature off.

While I love seeing an attempt at accessibility by Skims, I fear this piece would not actually work for the people who need it. Leaving this item more for show and not actually created/useable for the very population it was intended for.

Would this cami be accessible for you?

The adaptive clothing brands shown in the video are @EvenAdaptive, @Liberare.Co, @No.Limbits, & @Silverts_Adaptive 🌟

Video Description: Grace, a young white woman, is talking on camera and holding a mini microphone. She is wearing the cream colored Cotton Jersey Paralympic Cami by Skims with the words “Team USA” in blue on the front and an embroidered Paralympic Symbol and US Flag on the back. This is paired with navy, red, and green flannel pajama bottoms. Her dark brown hair is naturally curly and down. She has a silver bracelet on one wrist.

#AccessibilityMatters #AdaptiveClothing #AdaptiveFashion #DisabledAndCute #Paralympics2026

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