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Crowd Sourced Post: Traveling When you have a Disability

Initially this post was meant to be one where we shared helpful information, websites and other tips for traveling when you are disabled and/or have a child with a disability. But I also wanted to ask question and gather perspectives around the current difficulties and barriers to traveling when you have a disability. What unfolded were a few tips, with many more thoughts and frustrations shared around traveling with a disability. To make it even more clear, the original intent of this post was geared toward other people and families in the disability community to share helpful information–and that is still a small component–but now it’s geared more toward non-disabled people to raise awareness AND to encourage them to push for and make changes where possible. Or not possible. Really none of it is “possible,” in the eyes of most people, and we need to do it anyway.

Let’s start out with the tips!

Tips For Travel
Q: During the planning phase, what are the websites, apps, travel agencies, people/organizations on social media or other resources you use that help you plan your vacation?

Wheelmap.org
Trip Advisor forums and FB groups
accessibleholidayescapes.co.uk
Airline Disability Help Desk

–Hotel websites (calling to ask about accessible rooms, floor space for his sleeper and wheelchair, etc.) When we go to Disney we get the app to help navigate lines and food acquisition. Calling Parks Services to ask about the quality of trails and most crowded times.

–We tend to book hotels or houses that seem to be accessible however we’ve run into the problem of many hotels/resorts making those rooms significantly more expensive and therefore have opted to not book one of them and carry her/her wheelchair up flights of stairs instead because the extra cost would make traveling cost prohibitive for us and we feel like it’s better for her to see the world than not.

–We use AirBnB and read a LOT of reviews. Disability travel sites have never been helpful and travel agencies make it too expensive. For us it’s a lot of calling or emailing every place we’re interested in and asking detailed questions while knowing they may not know the answer.

–Word of mouth and careful research of where we are going.
  [readmore title= “Click through to read all about Traveling when you have a Disability”]

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An Accessible Spring Break in Hocking Hills, Ohio

In March our family went 2 hours north to Hocking Hills Ohio where we spent the week hiking, and also doing a few other activities that ended up being accessible for our whole family. Traveling and finding activities that we can do together as a family is challenging when you have a family member who needs accessible accommodations for most everything. The lack of access is apparent in every single aspect of travel–the planning, the drive and/or plane ride, the accommodations and of course the activities once you get there.

Planning a family trip for any family takes a lot of time, but planning a trip when a member of your family is disabled is a soul stretching exercise in patience, frustration, and endurance. I’m going to share our trip here and the things we were able to do to make it fun for everyone, and then I’m also going to share another post in which crowd sourced for tips and ideas around accessible travel. That being said, there aren’t as many “tips” as I had hoped, mostly everyone shared their frustrations and the lack of access in travel.

But first, here’s a round up of our trip.
&nbsp: [readmore title= “Click here to read all about our getaway in Hocking Hills Ohio.”]

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Life Long Objects

Sing a new song
Greet the bright yellow rays of sunshine
Floating through your window pane
It’s a pretty little world
–My vintage Hello Kitty cup I’ve had since I was 3

*****

When I was a little girl growin up in Gering Nebraska I lived with my grandparents. My mom, my brother and I all lived with my moms parents. We were there for 5 years. But my dad’s had also grown up in Nebraska and his parents were still out on the farm about 15, 20 minutes outside town. It was normal for us to go spend a weeked there, sometimes with cousins, sometimes just us. Every single morning I could count on hot cocoa on the stove and cocoa pebbles as a legitimate cereal choice. Heaven.

Neither of my grandparents weren’t the “play with the grandkids” type. (Was that even a thing?) We were expected to entertain ourselves. And so in both cases I was pretty comfortable doing my own thing and making my own fun, and/or hanging with my brother and (2 boy) cousins. Boredom was also an option. My Grandma Sue and Grandpa Fred were the ones who lived on the farm, in a big old farmhouse (at least in my kid memory it was big), where there was a large fenced in yard, a ride-on toy John Deere tractor, and a whole bunch of farm dogs. There weren’t a lot of toys, but there were some. And there were also the little trinkets and treasures around the house.

Among the treasures at my grandparent’s farm house was the little cabinet in which my grandma kept her bell collection. I loved to look at those bells, and sometimes she let me open the cabinet and play with them. There was one bell in particular that always drew my attention. It was small and brass, with little engravings on it. But what really drew my attention was the jagged bottom of the bell. Unlike most bells that have a flat bottom, so that when placed on a solid surface, the entire rim of the bell sits flush with the surface, this bell had these little jagged edges all the way around. It was my favorite.

To this day I could not tell you what any of the other bells looked like, but I’ve never forgetten that jagged bell. I also remember accidentally dropping that bell on my face as a child, presumable as I held it up to look from underneath and as you’d expect, those jagged little edges pressed a lifelong memory into my brain as they hit my curious, little face.
  [readmore title= “Click through to hear more about my attachment to inanimate objects.”]

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All About the “Special Needs” Sibling

Hey everyone! I’m so excited to be bringing you another crowd sourced post today in which I asked my Instagram followers (you can follow me here) to give advice to us parents about how we can best help our kids who are not disabled, alongside their disabled siblings. That’s a mouthful, basically what about those “special needs” siblings? I asked for input from both adults who were raised with a disabled sibling, as well as kids who are currently being raised with a disabled sibling. I received a lot of feedback–which was wonderful–but in the interest of length, I couldn’t include every answer to every question. Please know, that as a fellow mother of a child who is disabled and two children who are not, this post is meant to be helpful. This is not meant to add to the stress and guilt already inherant in motherhood, and often amplified in raising a child with a disability. As always I’d love to hear more thoughts and even questions in the comments below!

From Kids
What is the best about having a sibling with a disability, and what is the hardest part? 

Quinn, Tennessee
The best part about my brother having a disability is that it showed me that people, like anyone with a disability or difference, are just as special as me. Like, they deserve all the same things as me. And people who are different than me can show me the most amount of things I don’t know!” “The hardest part of having a brother with a disability is sometimes he can’t say with his words when he’s mad and he can push me. So sometimes I do it back because… well… that’s fair. Right? (haha! I think so Quinn!)
&nbsp [readmore title= “Click through for more advice from people who were raised with disabled siblings.”]

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The Entertainment of Traumatized Women

In November of 2015 I was struggling. We had just moved back to Cincinnat where my husband had gone from cushy Air Force hours where he was home every day at 4:30, to owning his own practice and suddenly it seemed like he was working around the clock. We now had 3 kids and I was a boiling pot of resentment for many (mostly unseen) reasons.

My dear friend Erin invited me to come and stay with her in NYC for a weekend. Erin is a yoga instructor, and at the time she was working with another friend of hers in healing work. Come she said. So I went. It’s hard to describe the what took place that weekend as I was led through exercizes that would cracked the exterior of a hardened heart wide open like a walnut, revealing a tender and still ailing heart beating furiously inside waiting for fresh air. Like I said, it’s hard to describe.

But what I can describe, and what I do remember was the tender and nurturing care. Left emotionally exhaused at times I would nap in Erin’s bed (as we do in Manhattan–“master” bedrooms are not sacred spaces) only to wake and see a warm bowl of soup on the nightstand next to me, or a piece of carefully prepared avocado toast. To have someone litterally watching over you, anticipating your needs and then meeting those needs is something we rarely experience outside the realms of childhood and physical illness. It still moves me to tears when I think about the nurturing I received at the hands of a dear friend. The kind of nurturing I’m not sure I had ever received in my life. The kind of nurturing everybody and every body deserves.

*****

A couple weeks ago I watched the documentry “Framing Britney” about the rise and fall–or limbo?–of Britney Spears and the tabloid culture that celebrated and participated in her downfall. Spears wasn’t personally involved in the documentry, so her point of view is speculation, but it was hard not to be moved to compassion on her part. To see the way she was stalked day and night by cameras just waiting to capture an envitable misstep. If someone were to film anyone every day of their life, of course you’d have fodder. Embarrassing moments, thoughtless words, bad hair days… and to be subject to this day after day after day… it would drive a lot of people, maybe most people, mad.

This is currently what we’re doing to ourselves, is it not? We post everything from a delicious meal to our political views and then we pounce. We’ve become our own papparazzi. Except of course that we choose what we share, and even when we choose it we often get it wrong. So imagine having no choice in what is shared about you? No boundry off limits, no moment too private for public comsumption. 
&nbsp [readmore title=”Click through to read my thoughts about how we consume women’s trauma for entertainment.”]

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Tips, Tricks + Advice for Wheelchair Users, From Wheelchair Users

Hi everyone! I recently asked my Instagram community–which includes many of you–if they would be willing to crowdsource ideas around disability centered topics so that I could share here on the blog, for the benefit of everyone. If you’d like to be included on future crowdsourced ideas be sure to follow me over at ThisLittleMiggy on Instagram. Also, please, please, please leave more of your ideas and solutions and even questions in the comments below so we can continue to help each other out!

The first topic is:  What are your best tips, tricks and advice for Wheelchair users and parents of children who are wheelchair users? This could be anything from “an easy way ro clean mud off your wheels” to :we found this product or tool that has been very helpful” and anything in between! 

I’m going to start with our family’s best tip that has been really helpful both for Lamp and us.

We use a Osprey Hydration backpack (pictured above) that hangs on the back of Lamp’s chair so that she has independant access to water whenever she needs it. Because there is a long straw that drops down on the side, she is able to reach back and hook her arm around it, and then bring the straw to her mouth. This has been particularly helpful at school this past year as the kids must bring their own waterbottles instead of using communal drinking fountains. Since Lamp can’t just grab a waterbottle from her backpack, and it’s a clumsy process in many ways to ask an aid/parent/friend to reach into your backpack to grab your water bottle and help you take a drink,  we have found this solution to be really, really helpful. While we used it in the past for roadtrips and such, we have basically started keeping it on her chair full time. Additionally, it’s helpful for us as parents and caregivers as we only have to fill it up about once a day. FYI, we do order extra silicon nozzels for the bite valve to keep on hand as they start to leak after a while.

Here are some more awesome insights and ideas from all of you about wheelchairs. Keep in mind that what works for one person or family, may not work for everyone–please be kind in your comments and suggestions. Also, these suggestions and ideas will differ widely for manual wheelchair users, vs. power wheelchair users, therefore I made sure to ask everyone to differenetiate between the two. 
&nbsp [readmore title= “click through to read all of the great tips + tricks you guys shared for wheelchair users!”]

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2020 Word of the Year: Perspective

My grandpa was the youngest of 24 kids.

He was also a small town optometrist, a double purple heart reciepiant who was shot behind the ear in WWII, a husband, a father, and a grandfather. But nothing is more impressive to people than when I mention he was the youngest of 24. The “runt of the liter” as he used to say.

With our Mormon pioneer heritage one might assume this high number of progeny was due to polygamy. It was not. Although, to be fair there was more than one mother (and father) and a little math involved. It goes like this: My grandpa, Lincoln Whitaker (named after Abraham Lincoln as they shared a birthday. Pardon me for the elongated sidenote here but, I like to imagine they were in the hospital like, “we have to come up with another name?” when some doctor or nurse walks by and casually mentions it was Lincoln’s birthday and they were like, “Lincoln it is!”) Anyway, my grandpa was Lincoln, and his father John, was married to a woman and they had 16 children together. Then she died. John eventually remarried another widow who had 4 kids of her own. (That’s 20 so far.) And then they had 4 more together. So yes 2 different mothers and 2 different fathers for a total of 24 children. But keep in mind that one of those men–my great grandpa John Whitaker–fathered 20 of those children.

While I always knew my grandpa was the runt of 24, the longer version came in bits and pieces. I remember once hearing a family member joke that his first wife must have died in childbirth. But it was just a “joke.” Turns out she died of the typhoid fever epidemic of 1907.

My grandpa’s mother, again who was also a widow, knew death as well. She came into the marriage with 4 of her own children, but she actually had 5. (So technically, he was the youngest of 25?) When her first husband died of a sudden head injury, their oldest child had died of black diptheria just 4 months prior.

It’s easy to talk about the death of other people generations before you. Even make little jokes. But these were sizemic shifts in people’s lives. 16 children lost their mother all at once. I’m here because of the death of that woman. Because of an epidemic. 

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Hey, I'm Amy!

I'm an author, artist, and disability advocate. I live with my handsome husband and three beautiful daughters in Cincinnati, Ohio.

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