Model with Spina Bifida, 29, YouTube channel to answer the questions that people are afraid of

A moment came into Danielle Marx's life when she realized she had never seen a character in a movie that looked like her.

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At least not in a depressing way.

She has spina bifida, an incurable condition that starts in the womb, when the base of the spine does not close completely, exposing tightly packed nerves to irreversible damage.

She grew up in Ohio with her brothers and sisters and didn't think much about it. But once she was around nine years old, it started to hit her.

& # 39; As a child, I was not aware of whether people accepted me or not, but now I am much more aware of it & # 39 ;, said Danielle, now 29.

And now she wants to play a role in helping children with similar circumstances find role models they can look for by starting her own Youtube Channel.

Danielle Marx, 29, is now a full-time YouTuber because she strives to shed light on spina bifida

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Danielle Marx, 29, is now a full-time YouTuber because she strives to shed light on spina bifida

As a newborn, Danielle was operated on to repair the opening in her backbone

As a newborn, Danielle was operated on to repair the opening in her backbone

As a newborn, Danielle was operated on to repair the opening in her backbone

Spina bifida is an incurable condition that starts in the womb when the base of the spine does not close completely, exposing tightly packed nerves to irreversible damage

Spina bifida is an incurable condition that starts in the womb when the base of the spine does not close completely, exposing tightly packed nerves to irreversible damage

Spina bifida is an incurable condition that starts in the womb when the base of the spine does not close completely, exposing tightly packed nerves to irreversible damage

For her own benefit, her parents kept her home for her first few years of school - but did the same with her brothers and sisters, so I never felt it was due to my disability, Danielle says

For her own benefit, her parents kept her home for her first few years of school - but did the same with her brothers and sisters, so I never felt it was due to my disability, Danielle says

For her own benefit, her parents kept her home for her first few years of school – but did the same with her brothers and sisters, so I never felt it was due to my disability, Danielle says

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& # 39; It is time for the world to see people with disabilities as people who can be fashionable, interesting, vibrant and important parts of society, & # 39; said Danielle.

& # 39; I hope to encourage fellow wheelchair users to live brave, innovative and fully. This includes showing parents of children with disabilities that they can thrive if they get the right tools.

& # 39; It is so important for children to have role models that they can look up to, and I hope that it can be for other girls and boys with a disability – whether it is spina bifida or something else. & # 39;

As a newborn, Danielle was operated on to repair the opening in her backbone.

From that moment on she had exactly the same upbringing as the rest of her brothers and sisters, never reminded of her handicap.

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She learned to swim and in her teenage years she joined a dance group because seeing her friends encouraged these goals to do the same.

For her own benefit, her parents kept her at home for her first few years of school – but did the same with her brothers and sisters, so I never felt that it was due to my disability.

& # 39; Fortunately, this meant that I have never experienced bullying experienced by many children in younger years, & # 39; Danielle explained.

& # 39; Moving to a school was a bit of an adjustment when I was older, but I didn't feel out of place because it is a bit intimidating for most children.

She learned to swim and in her teenage years she joined a dance group because seeing her friends who achieved these goals encouraged her to do the same

She learned to swim and in her teenage years she joined a dance group because seeing her friends who achieved these goals encouraged her to do the same

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She learned to swim and in her teenage years she joined a dance group because seeing her friends who achieved these goals encouraged her to do the same

The transition to a school with other children, as might be expected, came with some awkward moments. People stared at her and hesitated to speak or ask her questions

The transition to a school with other children, as might be expected, came with some awkward moments. People stared at her and hesitated to speak or ask her questions

The transition to a school with other children, as might be expected, came with some awkward moments. People stared at her and hesitated to speak or ask her questions

One of Danielle & # 39; s video & # 39; s touches fashion because she says people assume she's not interested in clothing because she's in a wheelchair

One of Danielle & # 39; s video & # 39; s touches fashion because she says people assume she's not interested in clothing because she's in a wheelchair

One of Danielle & # 39; s video & # 39; s touches fashion because she says people assume she's not interested in clothing because she's in a wheelchair

& # 39; There is no doubt that I would not like to answer in the right context, because I wish that a disability was not such a taboo subject & # 39 ;, says Danielle
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& # 39; There is no doubt that I would not like to answer in the right context, because I wish that a disability was not such a taboo subject & # 39 ;, says Danielle

& # 39; There is no doubt that I would not like to answer in the right context, because I wish that a disability was not such a taboo subject & # 39 ;, says Danielle

Danielle started posting videos on YouTube about Spina Bifida, using a wheelchair and answering questions that many people dare to ask

Danielle started posting videos on YouTube about Spina Bifida, using a wheelchair and answering questions that many people dare to ask

Danielle started posting videos on YouTube about Spina Bifida, using a wheelchair and answering questions that many people dare to ask

& # 39; I am really grateful that I started my education at home, but I am also very happy that I chose to go to school later so that I could experience both. & # 39;

The transition, as was to be expected, came with some awkward moments. People stared at her and hesitated to speak or ask her questions.

The good thing is, says Danielle, that she didn't fully understand the stigma associated with disability when she was young, although she didn't have the confidence to get everyone out of their lungs.

& # 39; Now, as an adult, I realize that they were staring because they were trying to understand, and now I love it when kids ask questions. But when those children were my peers, it was very difficult because I didn't understand, and I felt very uncomfortable. & # 39;

Danielle started posting videos on YouTube about Spina Bifida, the use of a wheelchair and answering questions that many people dare to ask.

Her video & # 39; s include & # 39; finding shoes: the fight is real & # 39 ;; & # 39; friendship and disability & # 39 ;, interviewing a friend about how it is; & # 39; dating and disability & # 39 ;; & # 39; wheelchair transfers & # 39 ;; and an interview with a fashion designer of clothes she wears.

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& # 39; There is no doubt that I would not like to answer in the right context because I wish that disability was not such a taboo subject & # 39 ;, she said.

& # 39; It is something that I was born with, that is not my fault, I cannot change, so why should I be afraid to talk about it or be offended by questions about it?

& # 39; In my daily life, it has never been something that I have looked at negatively, because it is everything I have ever known.

As she gets older, Danielle says, she feels more comfortable talking about her handicap - in fact, looking for opportunities to talk about it

As she gets older, Danielle says, she feels more comfortable talking about her handicap - in fact, looking for opportunities to talk about it

As she gets older, Danielle says, she feels more comfortable talking about her handicap – in fact, looking for opportunities to talk about it

In particular, Danielle says, a surprising number of people seem unable to parse physical disability with the assumption that she is cognitively disabled.
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In particular, Danielle says, a surprising number of people seem unable to parse physical disability with the assumption that she is cognitively disabled.

In particular, Danielle says, a surprising number of people seem unable to parse physical disability with the assumption that she is cognitively disabled.

& # 39; I think that is a big difference between someone born with a disability, as opposed to someone who becomes disabled later in life. The times that I feel insecure or frustrated by my disability are because of the reactions of other people, not because of the disability itself. & # 39;

In particular, Danielle says, a surprising number of people seem unable to parse physical disability with the assumption that she is cognitively disabled.

& # 39; It's sad to think that people think I'm less of a person and unable to do big things just because my legs aren't working.

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& # 39; It is incredibly daunting to be ignored because I happen to be taking a different approach than what is considered normal. It is difficult for the world to talk about diversity and inclusion, but people with disabilities are constantly forgotten in that conversation.

& # 39; I never want my handicap to be the reason that I don't do anything. Of course there are limitations and I cannot do everything, but I strive to do everything that I am capable of. & # 39;

As she gets older, Danielle says, she feels more at ease talking about her disability – even, in fact, looking for opportunities to talk about it.

It is worth it for the messages she receives from young people in wheelchairs.

& # 39; My favorite thing is when I get messages because something I've posted helps someone or when I receive messages from young people saying they are excited to find someone who looks like them and can look them up & # 39 says Danielle.

& # 39; That's the good side of social media: connecting with different people and creating understanding and empathy through shared experiences that someone else might never have understood.

& # 39; I think many people assume that people with disabilities don't care about fashion and what they look like, that we are incapable of relationships, that we are unable to be contributing members of society , that our lives are terrible and we are always sad. & # 39;

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That is far from true, she says. And anyone who has doubts about that can ask her directly.

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