Hi, my name is Helen and I live in Cincinnati, Ohio with my husband Sean and our six children, Hannah (19), Liam (12), Finn (10), Reilly (8), Dylan (5) and Cillian (1). I look forward to reading the spotlight each week, so I’m honored to have the opportunity to talk more about my son Dylan...
Hi! I started a new series called Miggy’s Favorite Things Lately where I share some things I’m loving as of late. Namely, something to wear, something to read, something to watch and something to eat. You can see the one, two and three here. Also, none of this content is sponsored and there are no...
Hello – long time lurker who enjoys your blog – just saw an article at CNN talking about a new art installation in New York called Access & Ability at the New York Cooper Hewitt, Smithsonian Musuem – thought this was a beautiful example of many of the things you talk about on your blog:
https://www.cnn.com/2018/02/21/health/disability-design-cooper-hewitt-new-york/index.html ReplyCancel
Wow, I meant to post this in January but time sure got away from me. Next week I’ll be back with more special needs spotlight posts, but I wanted to take a quick minute and tell you about a special doll that Lamp got this past Christmas and spread some of the joy and love for...
Hi! I’m Miriel. I live in the Midwest with my husband John, our son Gregory (3) and our daughter Rosemarie (1.5). John is completing his training as a hematologist/oncologist and I’m writing my dissertation in constitutional law. We live a chaotic, happy life and the only thing that could make it better is a little...
Every week, I look forward to reading your spotlights. I have learned so much. for some reason, reading Rosemarie's story and Miriel's words really hit home today. I think it was this part of a sentence in the section on fears "will likely develop will cause her to question her worth."… Question her worth…Wow. So profound. Thank you for your spotlights. I feel very moved today after reading Rosie's story. Many hugs. Thank you again.ReplyCancel
When I do a painting, I rarely have an idea of what I want it to look like in the end. It’s almost always a discovery and the process leads the way. However, when I do a craft or something for my home I almost always have an idea in my head of what I...
Natalie–Yes I absolutely do think it will work to do a word. Just make sure the letters are big enough. I could have even made the heart a little bigger. Also I would keep in mind the spacing for the letters–obviously you don't want them too far apart, but to make sure each letter looks separate, you want to give them a littel space. And remember after the first time, pick it up, lay it out and paint again…you'll want to do it at least 3 times to make sure you get various sides of the yarn. Send me a picture when it's done!ReplyCancel
One of my meal secrets is cooking one main ingredient in big batches, and using that ingredient in different ways throughout the week. Roasted sweet potatoes are one of my favorite ingredients to make in a large batch and to use in a variety of recipes throughout the week. They are delicious, versatile, my kids...
I hate stairs. Let’s just start there. Actually, let’s back up. You need some context. Lamp has two power wheelchairs. One is her “real” wheelchair. It’s the wheelchair we got through our insurance company when working with a physical therapist in San Antonio. She started training on the chair when she was about 18 months...
In a striking example of the Interconnectedness of All Things, a fandom site I frequent had a link to this:
https://www.youtube.com/watch?v=m2kWU3_8tn0
No, it's not about wheelchair access per se, but it is an example about how the built environment reflects what the privileged feel is "important".ReplyCancel
I hear everything you are saying. As an adult wheelchair user, I can tell you it's not as much the stores and the restaurants and other businesses, though there are access problems with some of those too, but the impact on the social life because almost everyone's home has steps somewhere and not always an accessible downstairs bathroom. I don't have a power chair but for me to visit there have to be people who can/know how to bring the chair up steps if it's a few, and when there's a big flight, people strong enough to actually carry me up the steps. It's awkward. Also, there's not enough accessible housing, especially in areas where there's not so much new construction. I live in an area where there are lot of Victorian houses, and when they convert them into offices.. went to an appointment at one, there was a ramp (not a good one) that led to an accessible entrance, and I was so mad when I opened the door and there was a gigantic potted plant blocking the entrance, and even more annoyed when the office person said I should have called and told them I was coming. ReplyCancel
Shannon,
As weird as it sounds I KNEW this was going to be the answer I would hear from adult wheelchair users, but in the back of my mind I was like, "No…they'll be another answer…someone is going to share with me some magical secret and it's not as bad as I think…"
It just sucks. Everything you said…about the impact on one's social life, and the lack of accessible housing. That is another thing that just infuriates me. And the RIDICULOUS idea that a person with a disability should have to announce themselves before they go somewhere…this is craziness. Thanks for sharing your perspective. This is why it's so important for people to keep talking and sharing because most of us have no idea. I had NO IDEA how much these things could impact a life. Thanks again. XOReplyCancel
Barb–It's not YOU. You shouldn't feel ashamed. I mean, thank you for caring and thinking about it, but for me it's another testiment to the fact that disability rights are given very little consideration overall in our society. You didn't ever think about it, because the world at large does a very poor job of thinking about it, talking about it and making these issues and the solutions a priority. ReplyCancel
So I'm just somebody who likes taking things apart/fixing things myself and has a family member who will always be in a wheelchair, albeit a manual one as of right now… They're heavy, as is the chair, and stairs do suck. Can't imagine how that's gonna work in a few years (it's not).
If the chair is built by a company who is not building custom motors in house, but rather buying them from a motor company, you could possibly buy the same motor or an equivalent and just swap it yourself. Or take the motor out and bring it to somebody who knows electric motors. Although I feel like the chair is an item that is built so that DIY fixes are difficult, like some modern cars and new phones, but I don't know. If it wouldn't void your ability to make insurance fix it, I'd have torn the thing apart by now. It already doesn't work so I probably won't make it any worse.
Of course, insurance should stop being dumb and just fix it. Get a lawyer to send them a letter or something. It's ridiculous that it comes to the point where you're better off buying a textbook on electric drive systems than waiting for the chair company to fix it. ReplyCancel
Thank you for sharing this! I have three children each with no physical limitations, and it is easy to miss all of the detail of this difficulty. I am a commercial interior designer and this has made me even more passionate about accessibility in design. I am now thinking about all of the obstacles and the logistics of a Mum like you or an individual that buildings and public spaces can present. I am also a lecturer at a university in the bachelor of interior design course and I will be showing my students this blog. In Australia we have Australian standards for accessibility and we also have the DDA, disability and discrimination act that we need to comply with, but your blog vividly illustrates the real stories behind these black and white documents and I hope it will help to embed conviction in our students that complying is not just a legislative requirement, it is a human response. And not only that, I hope that we can produce a new generation of designers who are thinking beyond legislative minimums, to ‘who are the people that may need to use this space? Are there any obstacles regardless of what I’m ‘required by law’ to address? So thank you! As I head into a new academic year, this is a beautiful reminder. ReplyCancel
Jaime,
Thank you. It means a lot to me when my blog is used for educational purposes. And I LOVE when you said, "I hope it will help to embed a conviction in our students that complying is not just a legislative requirement, it is a human response." AND yes to thinking beyond legislative minimums. So great. Thank you. ReplyCancel
Oh Miggy, I have tears in my eyes for both you as a mother and Lamp. It sucks. I'm with you, ever day, with my little Tough Guy. It's like you were reading my mind. I really wish there were easy answers. I seek daily to figure that out. Our school playground is a nightmare and it is slowly chipping away at Tough Guy's happiness at school. Not sure where I am going with this except, from one mama to another that gets it. Sending a hug. ReplyCancel
Jill–Oh yes…the playground…we've been there. When a 1st grader doesn't want to go to recess and eats super slow, or offers to stay inside and be a helper, well… it was heartbreaking for me. She likes it more now, but last year we definitely had a rough patch. I finally contacted the school to see if we could get some special equipment just for her. ReplyCancel
My visiting teacher has M.S. and relies on a power wheelchair completely. She is my visiting teacher because we have one of two houses in the whole ward that are wheelchair accessible. Even then, she has to go through the entrance to my husband's piano studio (where the ramp is) and navigate a narrow door into our main house. Her four children have all had to modify their homes so that she can come and visit them.
One of my husband's students takes piano lessons from him because his mom has C.P. and she can actually come to her son's lessons because we have a wheelchair ramp. I hadn't even thought of that as an issue before they told us that was the main reason that they decided to take lessons from my husband.
We didn't even think of these things when we picked our house, we just needed a house with a separate entrance for my husband's students, but I'm grateful that we have our ramp and it's made me more aware of issues of accessibility. ReplyCancel
I get that most people don't think of these things, but it's kinda crazy we don't because 25% of us will become disabled at some point in our lives. You would think that KNOWING we all have a high chance of becoming disabled that people would care more. I am starting to hear more about people building their homes with consideration for accessibility down the road, but it's probably just because I am in tune to disibility issues…I'm not sure it's on most people's radars as much as it should be.
Also, "her 4 children have all had to modify their homes so she can come visit." Yep. It's a reality. If there is someone you love in your family who has a wheelchair and you want them to come visit your home, you NEED AN ACCESSIBLE HOME. Period. I can tell you that it sends a very strong message when accessability is not considered. ReplyCancel
Thank you for acknowledging the enemy called stairs! My daughter and I both have physical limitations and everyday stairs are my number one anxiety. We can get up them (eventually) but need railings, which are on ZERO houses in our neighborhood. I am just constantly shaking my head in agreement with you about playdates, schools, things to make them included and independent. I have dealt with it all my life but vow to try and change things for my daughter.ReplyCancel
I live in a non-accessible home and coach wheelchair tennis. Many of my friends are in chairs and it is frustrating that we don't have an easy way for them to visit. We have a modified "ramp" that we can use to allow them to come inside, but not without assistance. We have a very small 1/2 bath and considered changing it when we remodeled our kitchen but it would have doubled our costs. For now we make do but when/if we move, accessibility is a must!ReplyCancel
Miggy, this was so heartwrenching to read. I share your rage.
I'm not a wheelchair user but I have a couple of good friends who are, and through them I've become aware of just how limiting a single step can be.
I've had to do the 'but are there steps?' sleuthing many times when going out with them. They have never come over to my split-level townhouse.
I'm an architect, so I deal with the accessibility issue at work, daily. Our building codes are much improved now here in Canada, and all new projects I work on are accessible (I don't work in residential, where we still have a ways to go). Yet I often get the client complaints at all the accessibility design items… "Why is that universal washroom so big?" "Do we really need that corridor to be that wide?" "Does every door need to be accessible width?". YES, YES we do.
Sometime's it's even colleagues who get annoyed. I see that it's a depressingly long road still to get everyone to understand how very essential this is.
On a brighter note, there's an initiative in Ontario and Quebec that's doing a little bit to remediate the problem of older, inaccesible buildings. They make portable, removable ramps and give them to small businesses that have one or two steps at their entrances.
These businesses often do not have the means or possibility to remodel their spaces, but these simple colorful ramps make all the difference.
Volunteers help build them and paint them. I see them in many shops around my neighbourgood now. An initiative like this one might only be scratching the surface of the stairs problem, but it's a good way of bypassing many of the reasons buildings don't get ramps retrofitted.
Thought it might show you a ray of hope to an undoubtedly sucky situation.
http://stopgap.ca/
https://montreal.ctvnews.ca/creating-a-more-accessible-city-through-ramps-1.3331168
(The Chris guy mentioned in that article is my friend, he's a power chair user living in an old city full of steps).
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Wow. Thank you for writing this. And I am sorry. So sorry. Truly. Life shouldn't have to be this difficult for anyone. This is heartbreaking.
You are a warrior. And you should be proud of yourself and your daughter(s).
I am stunned at how crappy (that's too soft of a word) the insurance companies are in this regard. The hospitals, even! I mean, WHAT?"
But in the meantime, what can we do? Lobby our politicians? Who do we contact? Insurance companies? Ugh! I'm going to start looking into this. We don't have accessibility/mobility issues in our family (our "special" needs are different), but we're part of the same family. That is, the human family.
Fight on!
Insurance is such a blessing and a curse. You're troopers, Miggy and Lamp! You are blazing new, amazing trails!
On "Fixer Upper" they just did a wheelchair friendly home. I was curious what your thoughts on that were. https://magnoliamarket.com/our-show/episode-10-copp-house/
Still love reading your blog! Melanie VDG (you know me from Manhattan)ReplyCancel
To close, custom trip of steps have numerous in addition to elements, for example, making a more open space inside a home,go to this web-site offer change from a focal staircase and can increase the value of your home. ReplyCancel
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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Thanks for sharing you story!
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