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.