Her father advised her to leave him but she followed her heart

Her father advised her to leave him, but she followed her heart. The passing of the Americans with disabilities act was a monumentally important moment in disabled people’s fight for civil rights. But there is more work to be done. In 2011, a kid named Shane Burkaw from Bethlehem, Pennsylvania, started a humorous blog to tell his life story of living with the disease that made his muscles waste away. As he grew older, the blog blew up, achieving half a million followers, a number that still grows to this day.

Shane realized how badly people needed humor in their lives, so he set out with his cousin Sarah to create a company that could help people laugh more and help others living with the same disease. Since founding of Laughing at my nightmare, shane has gone on to start a viral YouTube channel with his wife Hannah. The channel is called Squirmy and Grubs. Shane’s disability plays a huge role in their relationship, but not in the way that most people expect. Watch them navigate their life together and laugh with them along the way.

Sarah continues to operate lam’s program, which supply free adaptive equipment and assistive technology to the disability community. Since the founding of the organization, over $550,000 in assistance has been supplied. A disabled man who is in a wheelchair and his able bodied fiance have opened up about their sex life.

To combat the misconception that disabled people can be physically intimate with their partners, shane Burkaw, 27, and Hannah Elwood, 24, answered fans’questions about how they manage intimacy in their interabled relationship and their latest video shared on their popular Squirmy and Grubs YouTube channel. A lot of people assume it doesn’t exist, Hannah said of the physical side of their relationship.

That’s a really damaging stereotype for all disabled people when you assume that disabled people aren’t sexually active. Shane was born with spinal muscular atrophy SMA, a neuromuscular disease that causes muscles to deteriorate over time. He’s been in an electric wheelchair since he was two years old and can barely move his legs, arms, and hands. Their relationship started when Hannah reached out to the writer and public speaker after watching a documentary that the Office actor Rain Wilson produced about his life. In the email, she complimented Shane on his sense of humor and his writing before admitting that she thought he was very cute.

They got to know each other through FaceTime calls and text messages and eventually fell in love. Shane and Hannah launched their YouTube channel to better educate people about interabled relationships. They filmed their latest video specifically to address the many questions they get about the sexual aspect of their relationship. He explained that while they have made it a point to keep their private life private, there’s a lot of misinformation and stigma surrounding disability and intimacy that they wanted to dispel. In the clip, they used the word intimacy as an umbrella term to refer any number of sexual acts to keep from divulging too much.

When we say intimacy, we mean sex. We mean other sexual acts, she noted. The couple has previously noted about their desire to have children together, with Shane explaining in an old post on his blog that he is perfectly capable of having sex. The first question that they read came from a disabled woman in an interabled relationship. She became disabled when she was married, and she wanted to know how Hannah prevents injury to Shane.

Hannah admitted that she was somewhat afraid of hurting Shane when they first started dating, saying she would ask to move any part of him before doing so. I remember you being like, I don’t want to break you, Shane recalled, joking that it would tell her, Just break me, go ahead. Hannah noted that he is a lot less fragile than he looks, while he added that he is also very mindful of his own safety. Even after years together, he still reminds Hannah to be careful when she is putting his socks on for him. Shane is very cautious about his body movements and you verbalize it, she said.

I pretty much know how every single part of your body can move and to what extent and to what direction. I know his body as well as I know my own. The couple did, however, admit that years ago Hannah had him screaming in pain at the end of intimacy after she leaned in to give him a kiss and squished his elbow. Another fan asked if their sex life has benefited from their need to constant verbal communication, and they both agreed that able bodied couples should strive to be just as communicative. I think our intimate life does benefit from that and saying that both of us want in figuring out how to get it, Hannah said.

Because I think a lot of the time if you’re doing cookie cut or whatever, it might not be completely what both people are dreaming of. Shane added, when I am on the giving end of intimacy, I’m very prone to be like, that’s good. Is this fine? How’s this? Is this all right?

Hannah is often like, Shut up. Someone else asked if Hannah feels like she is the dominant one in the relationship because she has to comfort, chain and initiate intimacy, but she insisted that isn’t the case. She explained that her husband to be has a very outgoing personality and is really affectionate. While he can’t get up to give her a hug, he will call her over and ask her to lean in so he can kiss her or hold her hand. I like to be physically affectionate, he said.

I’m always doing whatever I can to embrace Hannah. My fiancee Hannah and I are strolling through a quaint downtown shopping area in Florida. We’re on vacation, and tonight’s mission is to hunt for souvenirs. At last we find a gift shop. But to our dismay, we noticed the front entrance includes three steps to the front door, making it impossible for me to get inside in my wheelchair.

Hannah goes in to ask if the owner might have a ramp or other entrance. She returns and shakes her head no with frustration. In the shop’s front window, a large bright sign cheerley proclaims all are welcome here. When we share this story with people, their reaction is typically something like, but what about the Americans with Disabilities Act Ada? I thought everything had to be wheelchair accessible.

This reaction and the assumptions behind it signal a massive misunderstanding of the current state of accessibility and disability discrimination in the United States. To be clear, the passing of the Ada was a monumentally important moment in disabled people’s fight for civil rights. Being born after its passage in 1990, I’ve only ever lived in a world that affords me its benefits, and I’m eternally grateful for the activists and trailblazers who fought tirelessly for decades to win us the protections that I get to take for granted.

My intention today during Disability Pride Month is not to disparage the Ada or the hard work that went into creating it, but rather to highlight the ways in which our society and our systems must further improve in order to truly protect the rights of disabled people under the law. To supplement my perspective, I spoke to many people with a wide range of disabilities.

What follows in a summary of the most crucial improvements to the Ada that the disability community hopes to see in the next 30 years of its existence? One improve enforcement of the law. Let’s go back to the gift shop as an example of the Aggravating lack of Ada enforcement procedures. Thanks to the Ada Education and Reform Act of 2017, if I feel discriminated against by a commercial business, I need to endure the following before I’m even eligible to make an official complaint with the Department of justice as the Aggrieved person, it is my responsibility to submit a written letter to the shop owner. OK, so in this situation, we head home and type up a letter that night, mailing it the next day.

The Ada has been around for 30 years. As of July 26, its policies have drastically improved our system surrounding disability. But there’s so much more to work to be done. Courtesy of Shane Burkaw the owner now has 60 days or two months to send me a letter explaining what changes they will make to remedy the situation. I hope our loved ones don’t mind waiting a bit for those.

Souvenirs once I receive the response, the owner has 60 additional days to make substantial progress on carrying out their remedy. Another line gives the owner unlimited extra time for circumstances beyond the control of the owner. It’s now been over four months, and I’ve missed my flight home, so I decided that a $12 Florida shot glass is just not worth the time and energy I give up. Even though this example doesn’t carry very high stakes. It shows the incredibly unfair burden that now falls on disabled people.

To initiate an Ada complaint, the Ada needs its own specialized department, staffed by experts whose sole purpose is to quickly and effectively prosecute violations of the Ada beyond better enforcement of the existing laws. I repeatedly heard several other hot ticket items of injustice from those who shared their thoughts with me. Two marriage equality for disabled people. Obviously, there’s no law explicitly stating that a disabled individual may not get married. However, there are many policies that make it virtually impossible.