Letters: February 2017


Seeing is Believing
Such a great article! — seeing the Paralympics through Seth McBride’s eyes and experiences.
Patricia Wolfe
Via newmobility.com

Helpful New Mom Tip
Thank you for sharing. I’m a tetraplegic with a 5-month-old and was able to pick up some tips [“My First Baby: Tips and Tricks I Have Learned,” December 2016]. FYI, I just found a thing called a Lap Baby that helps me wheel around the house with my son securely on my lap and use both hands to push my chair. And it’s not a hassle to take on and off like other carriers. It’s like a big Velcro wrestling belt!
Melissa Pera
Via newmobility.com

First Two Years Hardest
I didn’t become disabled until my kids were 3 and 5 years old, and although there are plenty of challenges in those ages and beyond, as a wheelchair-using Mama, I think the first couple of years would be the most difficult. Great tips!
Jennifer Loughrey
Via newmobility.com

Sharing Siblings
This story is just beautiful [“The Ripple Effect — Siblings and Adaptation,” December 2016]. It speaks to what is most important in life — those who share their strength with each other to lift each other up and understand the downs. Ours is a lovely woven quilt of people who make us who we are, support our journeys, and just love. We hope our children will know the same love and support of each other that Cindy [author Cindy Ranii] and her siblings feel.
Kirsten Johnson Pekarek
Via newmobility.com

Quad Tips Help
Thanks for the ideas [“5 ‘Quad Tricks’ for Managing a Day at Home Solo,” NM blog, December 22, 2016]. As my C5-7, three years post-accident husband’s only caregiver, I am always looking for little tricks/ideas to help him become more independent. He is just now coming “back to life” and starting to do things on his own. The light idea is great. I also thought of an extension cord with a big button on it like the ones used for cutting a Christmas tree on for lights and such. And the house swapping idea really sounds great. Where else would be perfect for a quad to stay but at a quad’s home that is already equipped for one!
Boyd and Lynn Hert
Via newmobility.com

More on Quad Tips
Great tips — since becoming an incomplete quad three years ago, I have gone through many adventures in learning how to be solo. Even looking after my son when he was crawling and changing diapers can be a disastrous endeavor. But the main thing is to never give up. What doesn’t kill you makes you stronger. And being a quad you are always learning something every day.
Paul Hass
Via newmobility.com

Regs and Hoops
Thanks, Obama Minions. I have primary progressive MS and it progresses yearly. Luckily got power chair before all these regs [Everyday Advocacy, “Forced to Pay Wheelchair Rental?” December 2016] — because my doc keeps up on regs. They also have me jump through hoops for my MS-specific drug every year— like I might have been cured!
Steve Slobodzian
Via newmobility.com

EDITOR: The following letter was written to CBS News’ 60 Minutes and also sent to  NEW MOBILITY. It has been edited for brevity and clarity. For more on the same topic, see Annie Elainey’s YouTube video:

Dear ’60 Minutes’ and Anderson Cooper
I am a long-time full-time wheelchair user, originally from New York. Yes, places like California and Florida are much easier to navigate and live, if you use a wheelchair. But there are still major obstacles and barriers for persons with disabilities. These are not being addressed throughout the USA.

Every day I see many new buildings not in compliance, with steps, no curb cuts, no path of access … and many other issues. I can’t shop at Sears, Macy’s, Walmart, and other places … can’t get down the aisles. These are not just ADA or access laws, but health, safety, and fire codes and laws that are not being enforced.

Parking (disabled or wheelchair) is a huge barrier and the most difficult. There are many more permits than there are parking spaces. We have an aging and expanding population with more needs. Existing laws on the books way before the ADA was enacted are not being enforced. New buildings and old buildings are not always in compliance with minimum standards (required under federal and state laws), much less with readily achievable standards, which are subjective. … Most people won’t understand this level of detail and nuance. Each disability is so different. It is not just about wheelchair access. This is a systemic problem that needs to be fixed.
David Daniels
Via newmobility.com


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