Creating Social Change with Brittle Bones

[@nancybeveridgetaylor3256]

I love the name the Lucy Foundation. My dear friend named Lucy, from Michoacan Mexico, lived with me for the last 4 years of her life. She had a form of Marfan's syndrome which my grandmother and 2 of my uncle's also passed from. She was a brilliant, free person who lived on her own terms. I was honored to be her housemate for those 4 years.

[@LatinButterfly]

I love this family! Two beautiful strong woman!!!

[@ReyOfLight]

This is just so amazing! I have friends with OI, and I live with Ehlers-Danlos Syndrome myself and have a cousin with Beals Syndrome, also most likely more relatives with EDS though I’m the only one with the diagnose. I also have a fair few friends with various degrees of cerebral palsy, and of course other disabilities and conditions. Slipped into the disability rights and activism world some 7 years ago when I got my first wheelchair and decided I wanted to meet others who are using a chair for various reasons, little did I know at the time that it would lead to being a board member of a youth organization for people with impaired mobility here in Sweden, I was on the board 2015-2017 and then I was too old to be active (it’s an organization for people up to age 32) but those years with that group of people I worked with and met, it was just amazing! Learned so much and grew so much as a person! Living with a disability can be a very positive experience, if you choose to embrace it and make the most of your life instead of lingering on and being bitter about your limitations. Not saying it’s an easy life by any means, but it’s most definitely not just a lot of doom and gloom :) A wheelchair is freedom, not failure!

[@noahlundberg3288]

Have EDS and just joined the other day!

[@Br0th3r7]

She is such a badass and so pretty!! I think she'll do great things

[@Apple-xt4vp]

The sweetest women in the world is in this video.

[@mandi3891]

Her style is absolutely amazing! It must be hard to look "like an adult" with a petite frame, but she has done amazing job to look her age :) She is truly an inspirational woman, great to see how she has turned her disability into a strength.

[@nancybeveridgetaylor3256]

As a nurse, specializing with children with disabilities for part of my training/career when I was a psychiatric technician/nurse, this closely touches my heart as I have cared for a few OI children. Having worked in both this world and also my family history of Marfan's syndrome as well as Loeys-Dietz syndrome and Ehlers-Danlos syndrome, all of which are in both my family and Lucy's family I love this story so much. ❤

[@lukep5836]

Keep up the awesome work Attitude your media work is so important for Aotearoa displaying the mana that would otherwise be go unknown.

[@wazup80]

God bless their courage, beautiful spirits, and the strength with which they pursue their dreams! Lovely family!

[@mikel9066]

What a truly beautiful soul.

[@yani4349]

“Once you know what’s happening, we have the responsibility to take action” ❤️

[@keztukariri]

Aotearoa is the world leader in the fast progression of all human "rights". It took some time but now we are the first to achieve a lot, if not, we are never far behind ❤❤

[@rachelm2983]

Thank you for posting this. As someone who has OI as well (type 3/4) I'm glad to live in this time in history that people with OI are allowed to be educated and have lives like everyone else. Im so happy Umi is able to record her story, it really does help extinguish the stigma/negative perception of people with disabilities. Im on my second degree, worked since 15 yrs old and own a house, this was 100% not possible if I was born just 15 years earlier. Thank you Umi 😊 you are making a difference!

[@laurakichler7107]

Umi, you're like umami, good at being every flavor. I also have a rare disability, and I salute you for your yearning for valuable change. Congratulations.

[@sonjab5292]

What a precious woman

[@清乃備瀬]

うみさんの優しい笑顔と、暖かい言葉が心に凄くしみました！

[@shoshannafachima1306]

Wishing uni all the best of luck and success in every path she takes. She is a wonderful and beautiful human being ❤️

[@keztukariri]

Congratulations Umi 😊😊

[@Bettinasisrg]

Giving a virtual hug ❤️

[@raeperonneau4941]

New Zealand is lucky to have acquired such a gorgeous soul.

[@ericvonwiegen5672]

Nice 👍

[@devoncook6597]

What an elegant young woman. She will do great things for her community.

[@kihachin]

GREAT!!

[@emilywiebel3238]

What a strong, determined & beautiful young woman! She def gets her strength from her mother who has fought her whole life and pushed through some awful times and kept going when many would have just given up. Umi is making a huge impact and helping so many who need it that are basically looked over.

[@CHOROUKROH]

❤❤❤❤

[@sarahemf]

Wow only 15 that’s great! Even with treatment I’ve lost count. Good to see oi women represent in media

[@eduardopadilla5505]

Great and beautiful video! :D Was this video made months ago, i hate being pesimist but what about the social distancing?

[@AttitudeLive]

Hi Eduardo, thanks for your concern. Yes, the majority of this episode was filmed prior to the outbreak, but equally, NZ has managed to keep Covid at bay so our filming restrictions are pretty limited.

[@eduardopadilla5505]

@@AttitudeLive Ok, excellent about everything! Keep making so great videos!

[@tryintolive1960]

The crazy thing is those with this disease also have similar facial characteristics. Umi’s mum looks like a lot of American people with Brittle Bones.

[@emsf396]

Hi Guys. I would like to get in touch to talk to you about employment discrimination, How do I?

[@yucefti5759]

お卒業おめでとう御座います オランダから

[@katherinebache8030]

I love this. But yikes yikes and yikes, I have moderately severe OI (osteogenesis imperfecta), and I live in the United States. My type of OI is classified as type 3/4. I would NOT be alive today without medical intervention!!! I cannot stress this enough, most people with brittle bone disorder who are moderate to severe would have incredibly short lifespans if it wasn’t for the current advancements in medicine. This is especially true when it comes to treating scoliosis, which is prevalent in OI. My lungs would’ve been crushed by my spine by the mere age of ten/eleven had I not undergone my first spinal fusion. That’s not to mention cardiac and respiratory problems most OI’ers face. For anyone who has OI and is apprehensive about seeking medical care, please take care of yourself and do not listen to this horrifying advice!!!

[@thrushestrange]

Asking someone to get regular medical checks is not a human rights violation

[@NotAnotherKuromi]

In reference to which part? In regards to having to pass a medical test every year to access the next year of uni I do think it is unfair treatment for disabled people. If it is a stable condition then it is a waste of time, money & resources. It is also infantalizing, suggesting that a grown adult attending university is not able to assess their own physical capabilities, which is both prejudicial & insulting. My friend who became a complete paraplegic at age 16 had to report to the local office every few years for them to check that his legs hadn't magically regained their function after 30 years! That sort of thing is fine for new injuries or conditions which fluctuate but as I said for stable, life long conditions, it is at best a silly performance forced upon disabled people alone & at worse very poor management of time, money & resources.

[@rachelm2983]

OI is a genetic mutation of collagen. It doesn't ever go away. Having to constantly prove that you are *still disabled* is infuriating to say the least. Canada is the same with regards to consistently having to prove you're still disabled. And yes, it is a human rights violation, there is no cure for OI, all the medical procedures are extremely painful, most not worth it (i have OI, type 3/4) I've had to fight doctors (as an adult) because I've refused experimental procedures.

[@thrushestrange]

Rachel M im talking in general you’re talking specifics

[@thrushestrange]

Rachel M it is also not a human rights violation for doctors to want to check someone’s health

[@rachelm2983]

@@thrushestrange yes it is, no one should have to right to force themselves unto others. If someone doesn't want medical treatment that is their choice. It has nothing to do with anyone else. And when you comment on a specific video, yes, you will get specifics that are related to the disability in question.

[@jack2023diamonds]

❤❤❤❤❤