Journey to a new Friend part 2. There is no handbook for this!

Wow keeping up with this blogging thing can be hard.  Some days I’m very motivated to write and the day just seems to get away from me.  I hope that those of you that are celebrating holidays this month are enjoying time with people you want to be with.  If for you that means time with Netflix I can totally relate to that too. I don’t live terribly close to my family so I usually hang out with friends on Thanksgiving and plan my trip home for about a week at Christmas. So I will be going home on Thursday and I couldn’t be more excited about seeing my nephews. We FaceTime and talk on the phone fairly often and my sister and brother in law keep me up to date on all the new things they are doing but we haven’t been in the same room since last Christmas.  (Thank goodness for face time!!!). Sometime around the end  October I sent my 4 and a half and 2 and a half  year old nephews a box filled with Halloween Goodies.( if you have littles in your life you know how important the half is.)
     Also in the box was a book telling the story of a little boy getting a mobility service dog.  I really want the boys to be as involved in this journey with me as much as they would like to be My sister explained to my older nephew that I would be getting a dog like the one in the book and some of the things that we all hope the new dog will be able to help me with.  We are collectively trying to ease them both into the concept.  So when he heard I was coming for Christmas he wanted to know if I was bringing the dog.  I have talked with my sister about ways that I plan to include him in the next part of the journey.  He seems pretty interested and that’s super fun for me.  Family and friends support is a very important piece of this in my opinion.  Because keeping it real here if I didn’t have that support I might let my brain which is prone to go places I have never given it permission to go anyway, take over and  low and behold I fall down the proverbial Alice in Wonderland type hole.  You know, where  I can’t see the bottom and nothing really makes sense. Some of you I’m sure can identify with this.   The first dog a person is totally responsible for teaches them things be that dog a pet or a working dog, about themselves .  So right now here are my chief thoughts about the continuing journey to a new service dog partner.  I keep having these dreams about Nikki.  No one told me that this journey would be so emotional.  I think about her constantly.  It doesn’t make me sad, but I’m a crier so happy or sad ... cute dogs on tv, other people’s service dog videos, I’m there and it makes me cry.  I’m going with this must be normal.  (For me)  Then there are the more practical things.  If all goes well.  I will start bringing the dog home in early February, when training begins.  I am nervous.  No one tells you about the nerves either.  It’s been quite a few years since I had to take care of a dog .  We are starting this new adventure in the middle of winter.  So that means bundling up and braving the chill which my body hates way more than it used too, because my new friend will need to go out for exercise and other things.  I’m of course willing to do whatever needs to be done and I whole heartedly believe that it will go well,  But it will be an an adjustment for both of us.  My roommate has a sweet snuggly jack russel mix.  We’ve discussed at length how to handle their adjustment to each other.  SSD knows all about her of course. I talked all about her in my meet the dogs session.  She likes other dogs and we think they will be buddies after that new roommate adjustment period.  We think they will keep each other entertained.  Perhaps  the silliest but somehow very real concern is what if my new friend really just decides he doesn’t like me.  I can hear you laughing. But wait hear me out.  I had an amazing bond with Nikki and even though that sometimes caused unforeseen issues, most of it I wouldn’t change.  I liked that I was her person and she liked that she was my dog.  I know this will come with time, and every relationship is different even with our dogs.  But there is a small part of me that worries a little bit that he will not like me.  Which in more adult terms means I am concerned about the bonding process.    I share all of this with you to help you understand that I think all of my feelings are normal. (For the most part)   Most of the time I am super excited that this is coming soon.  But I know some people who read my blog are in other parts of the service dog process, or with other programs and maybe this will help some of them to know whatever they feel is okay too.  New phases in life are exciting and nerve wracking because we just cannot know what we do not know yet.  Remember what I’ve said about how important  the support system is.  For me, in this phase of my life, that’s mostly been my sister.  I told her some of this and she listened and then said, “ I hear you and I understand.  But If you weren’t a little nervous I’d be more surprised.”  And after some more thought I’ve  decided to focus on excited for now.  Because my friends in a little more than a month and a half I’ll know who I matched with as long as everything goes according to plan.  Thanks to all you for your continuing support.  Please check out the links at the top of the blog to learn more about Susquehanna Service dogs or my continuing fund raising efforts.
And Remember to Keep Doing You. 💚

Journey to a new friend part 1

Happy Weekend my friends,

Today I thought I’d give you some insight into what my brain is filled with right now so buckle up.  Three years ago right after the passing of my previous dog (Nikki)  I began the long process to be matched with a Susquehanna Service dog.  I was in no way ready for a new dog. I was just starting to go out again. Here’s the thing about the passing of a service dog, there’s no break from the grief. Loosing a pet is also devastating there is no denying that but when you loose a service dog everyone you know and lots of people you don’t, will ask where your dog is everywhere you go. I had to be ready for that. Then when you finally get to the place where you can say she died, without being an emotional mess, everyone who asks feels terrible for asking. Because I am who I am, and I didn’t want them to feel bad.  I tried to comfort the people who asked.  Everyone was trying to be so kind.  But right than it really isn’t the time to tell your own loss of a pet story, because then we were both sad.  When I was home my house that wasn’t  usually quiet even when I was alone is suddenly so quiet.  Too quiet.  My amazing friends brought their dogs. Many of them didn’t ask they just came.  I thought that would be terrible idea but it wasn’t. Dogs are amazingly intuitive creatures and I believe they know when we are hurting.  So my friends bringing their pets and in one case another service dog was just what I needed.  At the time my mom commented on the wave of support that I got and how many lives Nikki had touched. Even I was bowled over by people who reached out to tell me stories of meeting us that I didn’t remember.  Nikki’s death wasn’t all that sudden.  She had a chronic illness that she and I had managed all of her life with varying degrees of success and amazing vet care.  She loved her job and had a long great life.  (My dad often said he wanted to come back as an animal in my or my sister’s life.  Because we are those cat/dog parents) That’s what I told people over and over again for weeks and months afterwords and I believe it.
    In any case, I was torn because I needed to grieve but the service dog matching process takes a long time for most people.  So two weeks after Nikki died I began again.  In the interest of  honesty it felt pretty terrible, the mind plays tricks on you   Because I was missing her I felt as if  filling out the papers and thinking of having a new dog in the future was disloyal.   It’s not but the brain and the heart argue about these things sometimes.  It took me awhile to finish the application. I pushed through because I knew eventually that I would have space in my life and heart for a new dog. Nikki was owner trained so the process of getting a dog through Susquehanna Service Dogs was different.  I filled out forms about my lifestyle, my apartment, my cerebral palsy and the things it made difficult, and the types of things I was hoping to see in my future service dog’s personality.  It reminded me of an old style college application, with a roommate survey.  Even up to and including a small application fee.  It all came in a thick envelope and was more than a little overwhelming.
     The second step in this process is an in person interview.  But the timing for that depended at least partially on me.  SSD needs to get all your paper work back so they can review it before they decide if someone is a good fit for their program.  They also ask for personal references. The questions on those forms basically relate to how well the people I chose  thought I  could care for a service dog and the benefits they saw to me  having a service dog as part of my life.  The tricky part for me about the references was I didn’t get to know what they said.    My job was just to send them the paperwork and not to think about it.  That was HARD.  Then if everything goes as planned they schedule an interview. That happened at the end of summer.  I had some very gracious friends split up their own work days to help me get to Susquehanna Service Dogs.  It’s a little over an hour from here.  This is when I got meet with a group of the staff.  It’s really like a detailed getting to know you session.  They went  over all the application paperwork, asked for details in some places and brought up other things I hadn’t as yet thought through.   They asked about my support system. It’s super important that one has a support system because it’s kind of a stressful process and I wanted and still want the people in my circle to know my new dog as well as many of them knew Nikki ( Clearly when you have friends who take half day’s so you don’t miss your interview you have great support.)   My friend Dave got to sit in on the interview with me.  We both learned a ton.  They talked about what to expect and explained as gently as they could that there is a waiting list and in my particular case, because of specific things I needed in a dog it might take the full three years.  Right then I was fine with that.  Because on that day I couldn’t imagine having another dog.  I was a college student.  Nikki had her share of health issues that at times wore me out.  Plus I couldn’t imagine ever being bonded to another dog that way.  So a nice  long cooling off and healing period seemed just right.
   After this meeting  both Dave and I got to meet some new puppies.  All the SSD puppies have themes to their names.  So we met the Cheese litter (all the names were based on a kind of cheese). I sat in the enclosure and someone put a puppy in my lap.  That’s when I met  Parmigiano who promptly fell asleep .  She snored so loud that her little body just  vibrated and she slept with her tongue out.  Puppy hugging is definitely in order for a healing heart.  Parm, by the way has gone on to be an amazing service dog with her partner Chris.  I follow her adventures on facebook. Many of the Susquehanna Service dogs in various stages of training  have their own pages. If you are on facebook check them out.  She has a special place in my heart because in a sense I’ve gotten to watch her whole journey and it helped to imagine my own. If you want to learn more about the program or my fundraising efforts check out the links at the top of the page.
Part 2 coming next week friends.  Until then thanks for your amazing and continuing support..  Remember to Keep doing You. 💚

Bullying Awareness Month

Apparently October is national bullying awareness month. I’m not sure how I am just finding out about this especially since the color for national bullying month is orange and my favorite color has always been orange.  Anyway yesterday I was part of a discussion on an instagram page a follow and many of us were discussing our experiences with bullying as people with disabilities and loved ones of people with disabilities and it really got me thinking about what I think bullying is.  I live in a part of our county where I feel I am safe in saying that education about disability and laws pertaining to those of us with disabilities is lacking.  Many people labor under the assumption that those of us with disabilities are to be taken care of and to inspire but we are not generally seen as full contributors to our communities. Generally in my day to day activities it still shocks people that I am responsible for several small humans during a given day, that I have a college degree, that I have  family who doesn’t have issues with me living an hour away from them ,and most of all that I don’t spend all my time wishing I could get around without my various mobility aids.   But those ideas themselves don’t make someone a bully.  In fact many people are very kind, but their idea of what a person with a disability is often trips them up in their interaction with me.   Here’s some real life examples from my day to day life.

1. Stopping  me on the street to ask me where my caregiver or parent is.
2  Offering to help me cross the street because the person is sure I’m not able to do that alone
3  Telling me that it’s super worrying that I’m doing something alone because who will help me when I need it.  And then telling me that my explanation isn’t allaying your fears.
4 Stopping me in a store to make sure I understand that I can’t just take something  (You know you have to pay right?)
5 Asking if you can pray for or lay hands on me because it will bring about my total healing and then I’ll have a happy life.
6 Asking me  inappropriate personal questions about my body or sex life because you’ve always wanted to ask.
All these things are awkward inappropriate and exhausting to be asked on a regular basis but they aren’t to my mind anyway actual bullying. They come from people who I like to believe have an interest or an actual concern but aren’t educated in the right way to engage a person who they see as different.

Bullying is about making someone feel bad about being themselves.  Attacking their self worth.  It’s about the bully’s need to feel superior or better about themselves and in my opinion  has nothing whatsoever to do with the person who is the target. Children often bully other children because they have low self esteem themselves or they think it will make the popular , some kids do it because they don’t want to be bullied themselves.  For children there is always hope to educate , there is hope that as they grow and mature they will understand why bullying is wrong. I know I did things as a kid and young adult I would love to take back.  Adults who bully, to be honest  I can’t think of any forgivable reason  for adults  who feel the need to bully but I have personal examples of that too.  Because it’s important to understand the difference if you want to be an ally.

1.Yelling retard out your car window as you pass by
2 loudly annoucing to a supermarket aisle full of people that you hope I’m not using my food stamps that you paid for to buy bathroom cleaner  (No food stamps here dude, but what are you saying poor people don’t deserve clean bathrooms?)
3 Following me around a public park and threating to call the police because you don’t think I an capable/allowed to be alone with kids
4. Sitting down uninvited at a table with me to whisper to me I need to get a job and stop being lazy
5  “You can’t possibly be a person of faith, People of faith don’t have handicaps.  What did you/your parents do to make you this way.?”
6. Watching the way I walk and then screaming out in a crowd of people that I’ve had more than enough to drink.
I could probably fill a book with the ridiculously obnoxious things total strangers have said to me in an effort to exert some sort of power over me.  Because they see me as weak or want to make sure I know my place in the pecking order of human beings. Sometimes it hurts me but mostly I just feel that the person isn’t very smart.  On the rare occasion that I decide to speak out to people who do this most of them slink off in embarrassment.  Once a person started to cry when she realized I actually had a reason for doing what I was doing. I never actually spoke to her, she was busy trying to say she was sorry.  And I suppose I could have heard her out but I got to keep it real  as an adult when you make the decision to bully I don’t have time for your I’m sorry’s Because to me that’s an I’m sorry I got caught acting foolishly.  I want to spend my time and energy with  people who have a genuine interest in learning about my life with CP  or getting to know me.  This also applies to those who say something nasty and follow it up with “oh not you I didn’t man you. I know you.’ No adult should have to know someone with a disability or any other perceived difference or their story to treat them with respect.   That’s really the bottom line for me.  If we all start from a place of basic respect there will be no need for apologies or blog posts and instagram feeds with stories like this   On a personal note one of the reasons I  am super excited about the prospect of a new service dog is that I experience much less bullying and social violence when I am with a service dog.  I want to thank all of your support thus far.  Anyone who is interested in finding out more or supporting me in this amazing journey please see the links at the top of the blog.  (I am so excited that I finally figured out how to put links on my blog!!!).   Have a great day my friends and remember to keep doing you 💚😊

Exciting News and New Adventures

Happy Saturday  Friends

  There is some exciting news in my part of the world and I’ve enlisted a mystery guest to help me tell you all about it,  Just about 3 years ago my  new partner (Laura) showed up at Susquehanna Service Dogs for her Initial interview,   She doesn’t know my name yet but my friends at SSD told me all about her. She was super nervous and a little bit sad because she missed her dog Nikki who had just passed.  Getting matched with one of us is a long process so she knew she needed to apply as soon as possible. At first it’s a lot of forms. The people here at SSD need to make sure that the right person gets matched with the right dog so, she filled out lots of questionnaires.  Some of her friends and family filled out forms too. All to make sure she could provide me a great home. . Then there was that initial interview where they asked her lots of questions about her life and personality. They also talked about all the ways a dog like me could help make her life better.  Then the wait began. I wasn’t even born yet. In that time Laura got a college degree and is now looking for a job but she thought about what being matched would be like almost every day. Then in September an email came inviting her to come meet some of us here who were waiting for our match. Again there were lots of questions about things she would like for me to help her with.  There were also lots of questions about what my life will be like when I live with her. They asked her about where I would sleep ( I know that sometimes I might get to sleep in her bed with her) and made sure I will have places to play when I’m not working. I was also told there’s a big park near her apartment where lots of dogs play. I can’t wait for that. Then we got to meet!! Now like I said she doesn’t know which of us she matched with yet because she met 4 of us that day. We are very lucky that we met on her first visit. All she knows right now is that I am a boy.  But that’s because she only met boys on her visit. I am learning all the special things I need to learn to be her partner right now. She is getting ready to bring me home. We are both very excited and can’t wait until we meet officially and that’s where you all could really help us out. It takes a lot of money to bring a specially trained dog like me home. We need to raise $ 8000 . Service dogs like me cost around $20,000 dollars to train Laura’s part of that is $5000 .   She also needs to be able to get back and forth to two and a half weeks of training or stay in the area which will require a hotel and transportation to and from training events Her disability prevents her from driving so we’ll have to do whatever will work best to make sure we don’t miss anything we need to know. We’d both be so grateful for any help you give. Even just sharing our story with people you know, to help us get the word out.

We are leaving the links for Susquehanna Service Dogs website. So you can all learn about the amazing place where I’m getting all my training. Susquehanna Service Dogs also has a facebook page with lots of great puppy pictures. If you have facebook check it out! https://www.gofundme.com/help-us-start-out-on-the-right-paw And the Link to our gofundme in case you want to help us out by donating to our fund or spreading the word.Susquehanna Service Dogs. Help us Start out on the Right Paw

Thanks so much for helping us start out our journey on the right paw. We can’t want to share the next adventure
PS. This amazingly cute picture is not me but it shows one of my buddies in  training practicing service dog skills.
** All pictures used with permission of Susquehanna Service Dogs

What did she say?

Hello my friends.  I am sorry for the radio silence but I’m taking the time  to get my head on straight. Having a disability means, well at least for me, it means things can get overwhelming.  It’s not the phyical limits that cerebral palsy places on me.  Those can get annoying but for the most part I’m adjusted to those, since those things have been part of my life forever.  It’s more often  the emotional work and preparation I have to do to go out in the world and live my best life.   It can wear on a person to know that every time they leave the confines of their own space someone will make a comment about them.   Honesly Friends there are.days, when if I  do not have to leave my house I just don’t.  Understand this is not about my feelings.  It takes a lot more than someone I don’t know saying something nasty to hurt me   The repetive nature of comments about my abilities just becomes exhausting.  Positive well meaning comments or negative nasty ones , there isn’t much of difference in how tired I get of listening or explaining, something to someone.  Or smiling at someone who is only trying to be friendly by asking me if I want to race them using my scooter, or if I’ve every gotten a speeding ticket.  I strive to be kind in those interactions because  the intention is to be funny.  They don’t have anyway of knowing that I hear that “joke” many times a week    Last week I had the most ridiculously funny thing happen to me.  So I thought I’d share it with you all.  One day I was going about the mundane things of daily life a woman approached.  She stopped me and exclaimed with all the wonderment and surprise that  usually happens when people like this stop me .  Oh how wonderful  I was out alone and could do various things without a helper.  That happens to me often enough that I usually say something to the affect of yes, I am pretty independent smile at the person and move on with my day.  But this lady went on at some length in that voice that people usually reserve for small children. I couldn’t  find an exit. Graceful or otherwise and so I listened to her go on about how my parents must be so impressed  with the things I can do,.  There’s this point when people are using that voice that I tend to tune out what they are saying.  So I was thinking about the other things I had to do that day , until she said “Most people with Downs, need much more help than you do you should be proud of yourself.   (Wait wait what did she just say???).  I said ma’am I don’t have Down’s  Syndrome.   She patted me on the shoulder and said  “that’s right my friends and I call it up’s syndrome.”  For the first time in a very long time I was flabbergasted.  That was the most ridiculous ten minutes of interaction I’ve ever been involved with.  I’m not sure why she thought what she thought.  I’m not particularly well versed in all the in and outs of what it like to live with Down’s Syndrome.  Except what I can glean from the few children I know.  I don’t know any adults with Down syndrome  personally.  I can only guess that she has slightly  removed experience with that particular condition (not the best word I know) and so when she saw me  she thought, that must be my struggle as well.   I honestly believe she meant what she said to me as encouragement or compliment but if I could have those ten minutes back  I would love to tell her that Down’s Syndrome got it’s name because the person who identified  it  last name happened to be Down.  Somehow I think that would have been lost on her and just made me seem snarky and bitter.  In truth, I really needed that .... the whole thing was an amazing stress reliever.

You are a college graduate on to new challenges! Or not.

As some of you may know I am a recent college grad.  I have a degree in English Language and Lirerature and a minor in psychology. It had always bothered me that I didn’t finish school though if I was to be totally honest about it the only reason I went to college after high school was because I didn’t know what else I could do. I enjoyed the experience but it became clear pretty quickly that it wasn’t the right  path. As the years went by I often wondered what my life would be like if I had finished college and I decided it was time to restart my college career.
       Going to college full time in  my forties when I had an entire life going on and responsibilities to attend to, was a totally different type of experience and being the student I had always wanted to be was a lot more work than I had anticipated . The classes were excelarated each of them being 9 weeks long. In my ignorance of how these programs worked I thought that meant less material was covered.  I quickly learned that all the material gets squeezed into those nine weeks and for the love all things related to my sanity I better not get behind.  I had the support of amazing friends and my family who cheered me on. In the case of my family they all called and texted and sent me funny pictures  to make sure I was still alive. Because all I did was write papers and do homework and study for two years.  I pretty much had no social life and very rarely came up for air.  There were weekends on end when all I did was obsess about dead writers, ask my friend who was my chief support and editor at that time.  She sat there with me while I cried, stressed, and thought about quitting every weekend.  It was so much harder than I could have imagined. I share all this so you have some context for what came next
      I graduated around this time last year.  I took a short breather and then I began that process of looking for a job with my shiny new degree all set to show off.  This is not to say that I expected this to be an easy task.  I am a new college graduate at the age that I am, with a fractured work history due mostly to issues related to my disability. Everyone I spoke with about this warned me about the economy and how long it can take any new graduate to find employment. I worried that my disability would be a problem.  But I know a lot about the Americans with Disabilities Act and assumed companies and thier staff doing the hiring in 2018 would too.   Not so much my friends, so this is my top 7 list of things I have heard as a person with a disability looking for a job in the year plus since I’ve graduated from college in no particular order.  Well okay, the first one is right at the end of college a few weeks before graduation

1. I was told that it would be impossible for me to manage or teach in any kind of classroom with a disability because I wouldn’t project the right authority if I couldn’t stand up.  (I didn’t think about how discriminatory this was because I was hyper focused on finals at the time.  Then I told  my sister the story and she  responded with “They said what to you?!?!”)

2 I was asked for a driver’s license at an interview and when I said I had a state ID card I was told it had to be a driver’s license but when I asked why I got no answer. (I don’t apply for jobs that require  driving as an essential function. Obviously.)

3. I was told that if I didn’t tell the interviewer what my disability was, there was no need to continue.  ( I said maybe you aren’t aware but legally you cannot ask that.  They told me in essence it would be my word against theirs if I told anyone they’d asked.)

4. “ Oh it’s so great to see you at out looking for a job.  You are so inspiring. I wish you luck.”  (Okay you’re not going to hire me but I’ll make a great story at the next meeting huh. Some version of this has happened a few times)

5. “If we decide to interview you will you need any accommodations for the interview?”  Well perhaps, I have a physical disability.  “ Ohhh  ummm well I don’t ... ummm .. someone will get back to you.” (Spoiler alert I never heard back I have changed the language I use when answering this question.)

6. “We don’t hire people with disabilities. (I hear various reasons from expense to flat out one person saying they do not follow the ADA There are some companies that based on size and or number of employees are not required to follow the law, but don’t say that on the phone.)

7. “ Will you need  accomidations for a possible interview?  Before I could respond the person on the phone said “ I don’t know why I have to ask that handicapped people don’t apply for jobs.”

In fairness not everything I hear violates the ADA . Some of it is just inappropriate.  Some of it is the result of what I can only assume is poor training that would make an HR department cringe. I have learned the fine art of finesse. Sometimes I have to answer questions differently. All of it is  emotionally draining. It’s just that I thought I wouldn’t have to be educating businesses about the basics of  the ADA twenty-five plus years  down the road.  I expected to have to do some advocacy and education about how cp affects me but not the wider laws.   But then I also thought 9 week semesters would somehow be less work then a full 18.   That wasn’t what I expected either. 💚😊

What life is like for me in 2018

I hope my friemds are okay with me taking my blog ideas from conversations I am involved in on facebook and in life. First I want everybody to know that on the whole of it I am comfortable in my own skin.  I like who I am.  Disability and all, there are few things about myself I would change. So I am not looking for sympathy or sad faces.  I have an amazing support system of family and friends.  I have meaningful ways to make a contribution to the comunity. In all the truly important ways I am blessed by good fortune and the abilities I need to have my version of a good life.  Now that we have that out of the way I’m going to share something that is making my life and the lives of many others  difficult. Part of having a disability and living life or having a public social media presence means that people will notice you.  They will make comments and ask questions and sometimes that gets awkward and nasty,  This happens to anyone who is different.  No matter what it is that society says makes that person different.  Mostly I embrace the things about me that make me “different” and get on with the business of living life.  I come from a family that does that with a quick wit and mostly positive attitude so that’s the coping skill set I learned.  It doesn’t always work because positivity cannot fix everything but it does help.

 And then my friends we had the beginnings of a political cycle that could easily do me in if I didn’t have that support system.  This is not a political post,  This is not a pro one party over the other post because although some of you who read it will see it that way, I believe individuals and groups decide what they are okay with.  They decide how they will treat others.  No one, no matter their position, is forcing anyone to behave in a certain way

     Right before the election I was sitting in a coffee shop because,well you all understand  how I feel about coffee, and there were some people discussing what they thought would happen. One of them was saying to the group “There’s gonna be a wall and not only will there be no more foreigners (my word not the word that was used)  but it would be good to put all the lazy cripples out too because they drain the system just as much. I had to get up and leave while feeling those eyes on me and it wasn’t an embarrassed look but one of snugness.  That’s when I knew my life and many other lives-could to get harder.  Much harder.  After the election I cried not because of the results but because I understood I would face more of this attitude in my daily life.  Let me give you some personal examples because we all know about the one’s that have gained media attention.

I have been out to dinner with a friend who also has an obvious disability and a total stranger approached us and told us we had better enjoy our dinner because the  administration was going to make sure we lost our food stamps.  (Assumptions much ) My friend insisted I hold my tongue because they were scared. I was not scared I was livid. I can’t tell you the number of times people  infringe on my day and personal space to tell me me our President  is  going to force me to work for a living.  I would love a better job. (Mr. Trump has yet to provide me with that as promised according to these strangers anyway ) I have another friend who is a foster parent to a child with disabilities who is a young lady of color.  It was suggested that she should be sent back to ,insert random country here, and President Trump was going to see that happen as the three of us sat in a local mall.  (My dad taught me what happens when you assume things. )  Let me just say right here I don’t for a second believe that President Trump cares about my dinner or our  personal lives but these people who claimed to be his supporters absolutely do.  Now when I go about my life  I am certain to hear about my need to get a job ( hello did you notice the children with me?  Welcome to my job). The minute I stand up to the bullying someone calls me a snowflake who’s parents didn’t teach her any manners because she’s handicapped. ( I find it almost funny because if you had manners you’d have kept your insults to yourself ) People used to at least look embarrassed when I called them on it. These days many of them just  call me more names. We are living in a society that in large part has decided it is acceptable to show hate for all to see. People have always harbored hate.  Hate is not new. But the frequency and volume at which some people now share it is something new.  As a person who is. part of a minority group, my life is 100 times harder now. I love my life but it’s never been a picnic to begin with.  I do not for a second believe that everyone who supports President Trump or considers themselves republican or conservative is supportive of this behavior.  I’m probably more conservative than most of my friends in a lot of ways. I refuse to paint an entire group with one brush and I wish people would stop doing it to me.  It’s a subgroup of people who used to have to hide thier hate more. They feel emboldened by the current climate happening in many parts of the county.  Imagine how hard it is to step out your front door if you are a person of color, a gay,lesbian or trans person, an immigrant a Muslim.,or a person with a disability.  Most  of us know we are a bigger target than before.  I have privilege that allows me not to worry for my physical safety.  Not all of my friends and neighbors are that lucky.  I am tired and yet. If I don’t push on, it’s like some kind of acceptance.  So I’m out there fighting everyday because my friends family and neighbors are too. 💚😊

“Shouting” into the abyss

I love warm weather.  I know some of you start counting the days until winter the first time we can all go without a jacket in the spring.  I know some of you start planning for next Christmas on December 26th.  I know this because just yesterday I saw a post on my social media feed that happily exclaimed that as of that day we are exactly six months from the holidays.  I like the warmer weather because my body can do so many more of the things I like to do without pain and struggle when it’s warm.  As a child care provider I love that with the warmer weather comes an opportunity to get the children outside.  I could go on for an entire post about all the things that I love about spring and summer, but as a person with a disability there is one thing that seems to come to the forefront along with warmer days.  It comes with prom season, graduation, and more people traveling over the summer months.  Some of you can already probably guess where I am going with this I bet.

     The warmer months, in my experience, are prime times for insprational stories making the rounds on the social media feeds and on tv.  Because all of my social media platforms have some degree of my passions for activism, civil rights, and equality I see lots of it. There was a great ted talk given by Stella Young in which she discussed specifically something that she called inspiration porn.  A term that many of us in the disability community now use freely to describe the stories in the media that show one view of disability usually for people who don’t have disabilities.  Stella’s definition is any story or image that objectifies disabled people for the benefit of non disabled people.  For example, any of the promposal stories where a student without a disability asks a friend with a disability to prom. And the media makes that story about how the non disabled friend is super  heroic for asking that’s inspiration porn.  Any picture taken and posted of a seemingly non disabled person helping a person with a disability do anything that was taken without the knowledge and permission of all the people involved.  Then suddenly that  image is shared widely for it’s heartwarming factor sometimes with  a different version of the story, that is inspiration porn.  Any story told about a couple’s life together after injury or illness that doesn’t include both people and one spouse is labled amazing for staying in a situation that isn’t termed ideal anymore.  That is also inspiration porn.  It’s important that we are all on the same page for the definition I am using here in my post.  So you can understand the story I am about to tell.   I have a huge problem with media spin.  When I see the stories done in this way I am compelled by my activist side to call it out.  I have written letters and numerous posts .  I’ve engaged with people I know and strangers to explain what inspiration porn is and why it can be harmful to society.  A few times it’s resulted in some small but important local changes.  Most often, not always, but enough, I get told I’m way too sensitive.  I have been told that I couldn’t possibly know what I was talking about. And then asked repeatedly if I am disabled (spoiler alert I never tell them because so not the point)  I’ve been yelled at  because these stories are needed in a depressing world.  Told that  disabled people are always happy and so they don’t mind (because after all look how happy they are about the prom  ect)   Chastised that I really know how to suck the sunshine out of a room. I am sensitive to it that’s very true.  Because in essence a lot  of the stories I see paint people with disabilities in a childlike manner and that makes our daily lives harder than than they need to be. But lately I’ve been met with  a hostility when pointing it out that is difficult to process.  I’d even once been told on a particular social media platform that I should go kill myself because I am such a downer and shouldn’t be around others.  If I was a teenager or someone who already felt that badly such a comment could have been enough to tip the scales.  The responses I get leave me with 2 questions Why are some people so entrenched in a belief that people with disabilities only purpose on the planet is to inspire  others like it’s our profession. (spoiler alert that’s not a job we get paid for or compensated in any other way so it’s not a “job’) that when asked to examine the beliefs  they become so violently angry they use name calling and threats?  2  How can we approach the subject with out incurring the wrath  of people who have so  much misinformation about the place disabled people occupy in society  that our rights to speak our own truths and tell our own stories scare or threaten  them? Please go and watch Stella Young’s ted talk.  She was an accomplished activist and speaker. And though we never met I miss her.   Stella’s ted talk

      

No thanks i’m fine!

Today I want to talk a little bit about something that may be a new concept and term for those of you who don’t work in the education field but those of us with disabilities know it as well.      But first I want to tell you all a story as an example. Earlier this week I was sitting in a coffee shop tapping  away on my laptop as many others were doing as well.  The difference between me and the others is that I was the only one with an obvious disability.  A stranger approached me and inquired if I needed help.  This happens a lot.  I am very often minding my own business when someone will come up and offer me assistance.  I am sure this comes from a caring place but I am very often struck by the fact that just being out alone or with small humans in public while disabled means a lot of people assume that I am in need of help.  I was momentarily jarred from what I was doing and jumped.  Because one of the lovely gifts I got from my cp is that I have a low startle reflex which means sometimes the smallest noise can make me jump.  It is one of the very few things about having cp that continues to embarrass me.  Even though I have no control over it, it is the one thing about myself I would change in a heartbeat if I could.  Anyway I told her no thank you and attempted to go back to what I was doing.  She said with a very worried tone in her voice. “I think you need help. Who takes care of you?”  The internal gremlin in my head ALWAYS screams  and jumps up and down at this point what in the world makes you think I need help?  I am literally sitting at a table using the free wifi like everyone else in this room.  I said “I can see you are anxious but I’m fine and very busy.  Have a nice day.”   I’m trying out a new way of handling these encounters.  Go me! She continued to stare and after what seemed like an eternity that was probably less than a minute she looked at me and with the same tone in her voice said “Your family must have been very cruel to you.”and then she walked off.    I guess she thought that but not accepting her help (that I did not need). I was making my life harder or something along those lines.  I will probably never fully understand how so many of the people engage me in this type of interaction go right to your parents didn’t love you or teach you properly,  That’s definitely a topic for another post.  There’s a much better way to handle this.  Which brings me all the way back to the term I mentioned in the beginning of the post.  I would never advocate not offering to help someone who you think is struggling with something. I believe in showing kindness whenever we can because the world is in desperate need of more of that.  But it is so very important to presume competence.  Presuming competence means to presume someone knows how to do something in the way that works best for them.  No matter what we think makes their live difficult from the outside.  In education I have heard it used for students who may have communication difficulties, just because someone may have difficulty communicating in the way we expect doesn’t mean they aren’t  communicating or that they don’t understand what you are saying to them.  In my example the problem isn’t with the fact that the person offered me help.  It was that even after I declined she continued to presume based on only what she was seeing that I was less than capable of taking care of myself.  Then she compounded the issue by making other assumptions about me and what my life must be like.  She made her choices based solely on a five minute interaction.  If you see a person with a disability out and about and you decide that you’d like to offer help to them.  Listen to how they respond.  They understand their needs better than you someone who is just offering to help, ever will.  Whatever you decide to do take them at their word, it’s likely not personal and is no reason it should be seen a sign of a bigger issue. People with disabilities if we are lucky get offered more help on a regular basis that we could need.  💚

Intro... How CP Affects Me

I haven’t had an active blog in years but I really did enjoy having one and so here I am again.  I’m not sure if anyone will read this but I’m going to share some of my daily adventures with you and hopefully we can have some deeper conversations about what it means to be a person navigating the world with a disability.  I have always believed that the way to approach things I don’t understand is to learn about them.  So. I am hoping we can do that together.  I am 45 years old and I live with spastic quadriplegic cerebral palsy.  Which is just a fancy way of saying that I have a brain injury that affects the way all four of my limbs move. People have cp from birth or very early in life (before the age of three). Or it wouldn’t be considered cp anymore.    This doesn’t mean you are diagnosed by then it only means the injury occurred by then. There are other types of cerebral palsy and other affects depending of which part or parts of the brain are injured.  What is important to remember is that cerebral palsy is a kind of umbrella term that incompasses many different types of affects.    Some people are affected on one side of their body, some people only in one arm or leg. Some people use a wheelchair or a other device to get around because they cannot walk at all.  Some people have difficulity  with speech.  Some people have difficulty learning things For me, I struggle most with balance when standing or walking.  My body moves very differently than is typical.  Cerebral palsy affects my stamina which is another fancy word that means how far I can go before I need to take a break. I’ve read in many different places that people who have cp use three to five times more energy when the do physical things than a person without cerebral palsy.  So it takes me longer to do certain things perhaps but with very few exceptions I do just about everything most other people do although   I may do differently than people would expect.  I use a walker a scooter and sometimes a wheelchair to allow me to live my best fullest and most independent life.  Here are some other other things I have been asked often. Cerebral palsy does not get worse  but it’s affects on a person can change as they age, the same way all of our abililities change as we get older.  It doesn’t affect life expectancy but some of the health issues a person may have because they have  cp can, for example some  people may have difficulty with swallowing or breathing or moving or communicating or other things may affect how long they live.  These are just the examples I can think of and what someone’s journey through life may look very similar or very different than mine and yet we can have the same diagnosis on paper.  I am here to share my experiences because that’s all I know. My goal is to continue a conversation about daily life with disability.  I hope to expand on some of the challenges I face with humor,passion love, and coffee because everything is better with coffee.