I have a blog on some more service dog thoughts coming hopefully by Monday but friends I feel like we need to talk about something else. So bonus blog today, last week I posted on facebook about needing a new battery for my scooter. I share certain aspects of life with my cerebral palsy because I feel it’s important for people who don’t travel in this circle or know anyone who does to understand what an experience of disability life can look like. I can only speak to my own experience of course. But there are some things that so many people I know also experience that I have decided to use myself as an example. So back to the scooter battery. As you all know I am heading off to service dog training in just a few weeks. There are a lot of things I need to do in order to prepare for this. One of the first was to make sure my wheels are in tip top shape. Once a year I have to replace the batteries and it gets the once over to make sure everything is working as it should. This costs around $300 as long as all it needs are batteries. It is an expense I budget for. I share this because when I mentioned it in passing I got ridiculously opinionated emails/messages from people who feel they know something about my life and finances enough to say things like If you can’t get your scooter fixed what makes you think you should be asking hard working people to support your service dog? Why don’t you just get a job instead of asking strangers for money? Now I put myself out there in the hopes of spreading awareness for people who are interested . So I have come to expect and understand that the uninformed see me as a target and that it brings them some kind of pleasure to cut me down. (Also I am not sure where these lovely people got the idea I wasn’t going to pay for the “repairs”) Fine whatever, I don’t give two shakes what the nameless hoard of keyboard warriors thinks of me, But I thought we should talk about the bigger picture. When you or your loved one has a disability there are just expenses that you must deal with that most people without disability experience don’t think about. I’m actually fairly lucky. My health is otherwise good, I don’t require lots of extra adaptive equipment or extra medical intervention right now. I don’t require a ton assistance to go about my day to day life when things are accessible. And my service dog will help a lot with my physical struggles. Making it possible for me do more. Hopefully allowing me to go further in a day because he will help me to save energy. Right now one big task such as cleaning my house requires most of my physical energy. I can definitely do that but constant bending over to lets say pick up something that’s dropped on the floor or spilling something in the kitchen that’s going to require multiple steps to clean up will be all I can physically do in one day. I am grateful for my ability to walk ,and bend to pick something up. But bending over too often or too far will mean falling I am able get my house to certain level of clean to walk up and down a fight stairs if I absolutely need to no matter how slowly I may have to do those things. But it’s not that way for everyone. I have friends who need assistance with all of those things and more for themselves or their child, Contrary to what these keyboard warriors seem to think there is no magic fairy of disability that pays for all the equipment. Insurance doesn’t pay for it very often either. Now imagine you have a child with a disability and she outgrows her equipment. All of her doctors and therapist that you likely pay for out pocket, because she needs more therapy then your insurance says she can have , agree she needs the new equipment in order to live her best life. But when you as her parent or her doctor tell the insurance company that’s what she needs they say sorry but she had a new one six months ago and its not time Then what?? You sit down with that child and tell her she must not grow for a year? There’s no office of magical accessibility fairies to build us that ramp, or make the bathroom in our houses accessible either. No one pays our bills. What we need to make our lives manageable, to do the things non disabled people do without a second thought, is very often financially unattainable. I don’t know where so many people have gotten this idea that we are all independently wealthy or that that magic money tree shows up with your person with a disability card. Please note my sarcasm intended in the last sentence. In my case I have a college degree, and good grades that I am proud of. What I don’t have as yet is a job that will allow me to use my skills or pay me for the use of my skills. People think I am awesome and inspiring but they can’t see past the scooter or the way I walk in order to see what I bring to the table. Again I’m lucky because I can work given the correct environment and the right open minded people. But what if you can’t because your disability prevents it. Or your child needs that kind of care you can’t find anyone to provide. Attendant care isn’t free. Specialized care for children or adults who need is often ridiculously expensive. That computer program that talks to you so you can use the internet and send emails so that you can continue to work that or the really great hearing aid that lets you know when your kid’s needs you from another room or when the dog is barking to go out, is so expensive that you can’t even dream about those things. Even if you find you can get some help you have to jump through all kinds of hoops to get it. And if you or your family is able to jump through those hoops and is getting help that could change at any time with little or no notice. So many of us resort to fund raising in various ways to get what we need. It’s not easy to ask, we know there will be judgments, most of us are ok with that because we also know that the people who matter already know the truth. I will do whatever I need to do to live my best most independent life without shame. I hope to some day be able to support someone else in the myriad of ways I have been suooirted through out my life. That is part of all the reason I do what I do. I hope dear friends, the next time you hear someone making that judgemental comment you will remember what I’ve shared, Thank you so very much for the continued support of my journey toward a service dog. Time is flying. I’ve gotten so much support and I am grateful. If you want to know obout my service dog journey or fundraising efforts please see the links at the top of the blog. Feel free to get in touch if you have questions and you can find me on Instagram/Twitter @mobilitydiva Or on facebook same name as the blog. Keep doing you!💚🐾
