People-first language is a form of linguistic prescriptivism in English, aiming to avoid perceived and subconscious dehumanization when discussing people with disabilities, as such forming an aspect of disability etiquette. (http://en.wikipedia.org/wiki/People-first_language)
Today I was faced with a statement, that not only puzzled me, insulted me, but most of all made me shake my head in disbelief. I was told that I was an insult or disgrace to "disabled" people, and that the way I choose to define myself is part of why people with "invisible" disabilities often are looked down on.
I have been experimenting with making different kinds of bead jewelry lately, and I am in the process of setting up a little store on the Internet where I can sell it. In addition to that, I have also sold some stuff just by people asking me where I got the bracelet I was wearing etc, and I would take orders and custom make a new one. I had promised a lady in the pool that I would bring some in for her to see, as she thought she would like to buy one. A person came to me and told me that when marketing the jewelry I should market it as being made by a disabled person, because "disabled" people never get the credit they deserve.
I found the following definition on Wikipedia:
A disability may be physical, cognitive, mental, sensory, emotional, developmental or some combination of these.
Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.
Thus disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives.
—World Health Organization
(http://en.wikipedia.org/wiki/Disabled#Physical_disability)
As I stated above, I was insulted by the statement, and for a brief moment, my brain clearly saw the person that I aim to be, so my response was that I saw absolutely no reason why I should market myself as a disabled person. I told her that for the longest time I have been working on figuring out who I am, and I still have a long way to go. I told her that I define myself as Pernille, a person with many abilities, but also with a physical disability. I have no intent to put the "prefix" disabled in front of my name. She then proceeded to tell me who I am, and that by pretending not to be "disabled", I made everyone else look bad.
She told me that by not defining and "promoting" myself as Ms Disabled Pernille, I was in denial and that by "suppressing" my MD, I made other people's issues seem insignificant, because they all know how tough everything is for me. I told her that no one but me knows what is tough, and what isn't. It is tough to need help; it is tough to watch people do things I would like to do but can't. I grieve over the things I have lost, and probably will lose in the future. I grieve over all the broken dreams, sometimes it is tough to get out of bed in the morning because of those things. It is tough to know that there are people out there who see my disability before they see me. But..... despite all the tough things out there, there are many more things that aren't. Going to the pool and exercising isn't tough, listening to her is. Making jewelry isn't tough, it is relaxing. I told her that I am not hiding my MD, it is very visible, and I am very aware of it, but that I have no need or desire to toot my own horn when I do something that has nothing to do with my disability. However, people, if one day I wake up and notice that I can do things I have not been able to, because of my hard work, I will toot it, and trust me, you will know. I work hard on keeping the disease at bay, but why on earth would I define myself by that, when there are so many other things to life that I can do.
How do you define yourselves? How do you define your friends? Are you putting labels on people because you project what you think they are? Do you refer to your "lesbian" friend, your autistic neighbor or the person in a wheelchair as a disabled person? If you do, I want you to stop and think... A lesbian friend is just a friend who happens to be a lesbian, your autistic neighbor is a person with autism, and the person in the wheelchair is a person with a disability.
Let us all watch how we label and see people. Labels are nothing but the feeding ground for pity, stereotypes, wrong assumptions, unnecessary limitations, I bet you could all keep the list going forever.
All I ask is for people to look beyond what they see or don't see, and consider us all for what we are, namely human beings created with different abilities and disabilities. Let us remember and adopt the People First Language as defined by the American Psychological Association style guide, in the opening quote!
I am Pernille, a human being.
Peace
Contact email keepinghopejourney@gmail.com
Wednesday, September 28, 2011
Tuesday, September 27, 2011
Honey Update
I just thought I would share, that I got an email from the city today, in which, they agreed that even though the center I went to last week is ADA compliant, they also deemed it "prudent" to put in more accessible parking spots!
Contact email keepinghopejourney@gmail.com
Contact email keepinghopejourney@gmail.com
Sunday, September 25, 2011
Sometimes you catch an angry wasp!
The most aggressive stinging insects are Vespid wasps which includes yellow jackets. They all aggressively defend their nests (adapted from Wikipedia), and speaking from personal experience... a sting from a yellow jacket can be rather painful, but if you are not allergic and treat it with Benadryl, the pain is brief and quickly turns into a distant but slightly unpleasant memory.
When dealing with a disability, life can be frustrating. Accessibility is not always the way it should be; everything takes longer than it does for everyone else, etc. I consider myself an aggressive, but reasonable, activist when I encounter obstacles that don't need to be there. My philosophy is the old cliche that you 'catch more flies with honey.' I have in the past sent emails to places, where the accessibility just did not make sense, and in kind words explained why. Every time I have been successful in making the suggested changes, at times within 48 hours! Honey is sweet....
However, when catching flies with honey, you need to remember that wasps also have sweet teeth (at least they do in my brain :-), and occasionally you catch and angry wasp near its nest, and get stung.
I was at an event for senior citizens the other day along with my friend Lesa from FDOA. We were supposed to be telling people about a program we offer called RAPAD. The event was held at a neighborhood health/community center in one of the poorer parts of town. I arrived to find that there was only one accessible parking spot, and two spots reserved for staff by the best entrance. The rest were, well, just parking spots that would require anyone with a walking issue to walk on an uneven surface for long distances. The closest parking spot was very far away, and there was no way i could have safely walked the distance to the entrance. I finally found a second Handicap parking spot, all the way at the end of the building. There was no signage telling people how to get into the health center, but there was a long ramp leading up a hill. I had a hard time imagining that you would have to walk that far up hill to enter the building. Physically I felt strong that day, and walked really well so walking the distance was not a major issue, and once I had tested all the entrances I could see, I decided that the ramp running all the way along the building was the way in. The slope was OK, and there were railings most of the way. But while walking up the hill I got increasingly annoyed. It did not make sense to me that there was a parking lot that would allow for direct access to the building for people with disabilities, but two of the three good spots were reserved for the staff. The honey was seeping out of me in a hurry.
During the event, I did build up a new supply. So when the director of the center came to thank us for being there, I mustered up my honey, and asked her kindly if she was aware that the setup was not really conducive for a place catering to senior citizens, and people with disabilities. That was when the wasp caught me, this specific kind of wasp stings with it's eyes, words, and legalistic attitude. The look I got was ice cold, and she very pointedly said "IT IS A.D.A. COMPLIANT. WHEN WE REMODELED, THE CONTRACTOR SAID IT WAS A.D.A. COMPLIANT. IT IS A.D.A. COMPLIANT, THAT IS ALL I HAVE TO SAY". In Danish we have an expression saying "at finde en grimasse der kan passe". It basically means to seek the right expression when someone catches you completely off guard with a completely unexpected answer to a question. I am not sure what I looked like, but I have a feeling that my jaw was hitting my chest and I might even have drooled...
After that incident, I just couldn't help but wonder what would cause a person, working for the city, in a position where she is supposed to make sure people get what they need etc, to become so angry, and lethargic. What would cause this person to put in one truly accessible spot, and then reserve the second best for herself, and leave the rest of us hanging at the bottom of a hill. I was surprised at her anger, especially when the question was asked with honey and not arsenic. There is an incredibly easy solution to the problem, but I think that when dealing with this kind of legalistic people, even a whack upside the head with a baseball bat would make no difference.
Normally, when I experience places that easily could be accessible but are not, I believe it is not done with malicious intent, but rather just ignorance. I have now learned that there is an added, and not nearly as easily dealt with, component namely legalism. Yeah, she did what was required of her by the law, but she forgot to use common sense in the process, and unfortunately you can't make laws against people lacking empathy and common sense. You can't legislate common sense...
I sent a friendly email to the director of the specific department in the city of Tallahassee, and within 24 hours I had a very nice answer that it would be looked into, and he would get back to me.
I look forward to hearing from him, I hear he is a nice guy, so maybe the parking spots will be switched around to make more sense, and not just comply with A.D.A. standards, and maybe he will be able to take the sting out of the wasp.
I will continue to use honey in my "traps" in the future, but now I know that sometimes you may place the honey too close to the nest of an angry wasp.
My challenge for you for the week is to look around and imagine you are the one with a disability. Which unnecessary obstacles do you experience, and could they be eliminated or made smaller without much effort. You might just be surprised...
Love and Honey,
P
Contact email keepinghopejourney@gmail.com
When dealing with a disability, life can be frustrating. Accessibility is not always the way it should be; everything takes longer than it does for everyone else, etc. I consider myself an aggressive, but reasonable, activist when I encounter obstacles that don't need to be there. My philosophy is the old cliche that you 'catch more flies with honey.' I have in the past sent emails to places, where the accessibility just did not make sense, and in kind words explained why. Every time I have been successful in making the suggested changes, at times within 48 hours! Honey is sweet....
However, when catching flies with honey, you need to remember that wasps also have sweet teeth (at least they do in my brain :-), and occasionally you catch and angry wasp near its nest, and get stung.
I was at an event for senior citizens the other day along with my friend Lesa from FDOA. We were supposed to be telling people about a program we offer called RAPAD. The event was held at a neighborhood health/community center in one of the poorer parts of town. I arrived to find that there was only one accessible parking spot, and two spots reserved for staff by the best entrance. The rest were, well, just parking spots that would require anyone with a walking issue to walk on an uneven surface for long distances. The closest parking spot was very far away, and there was no way i could have safely walked the distance to the entrance. I finally found a second Handicap parking spot, all the way at the end of the building. There was no signage telling people how to get into the health center, but there was a long ramp leading up a hill. I had a hard time imagining that you would have to walk that far up hill to enter the building. Physically I felt strong that day, and walked really well so walking the distance was not a major issue, and once I had tested all the entrances I could see, I decided that the ramp running all the way along the building was the way in. The slope was OK, and there were railings most of the way. But while walking up the hill I got increasingly annoyed. It did not make sense to me that there was a parking lot that would allow for direct access to the building for people with disabilities, but two of the three good spots were reserved for the staff. The honey was seeping out of me in a hurry.
During the event, I did build up a new supply. So when the director of the center came to thank us for being there, I mustered up my honey, and asked her kindly if she was aware that the setup was not really conducive for a place catering to senior citizens, and people with disabilities. That was when the wasp caught me, this specific kind of wasp stings with it's eyes, words, and legalistic attitude. The look I got was ice cold, and she very pointedly said "IT IS A.D.A. COMPLIANT. WHEN WE REMODELED, THE CONTRACTOR SAID IT WAS A.D.A. COMPLIANT. IT IS A.D.A. COMPLIANT, THAT IS ALL I HAVE TO SAY". In Danish we have an expression saying "at finde en grimasse der kan passe". It basically means to seek the right expression when someone catches you completely off guard with a completely unexpected answer to a question. I am not sure what I looked like, but I have a feeling that my jaw was hitting my chest and I might even have drooled...
After that incident, I just couldn't help but wonder what would cause a person, working for the city, in a position where she is supposed to make sure people get what they need etc, to become so angry, and lethargic. What would cause this person to put in one truly accessible spot, and then reserve the second best for herself, and leave the rest of us hanging at the bottom of a hill. I was surprised at her anger, especially when the question was asked with honey and not arsenic. There is an incredibly easy solution to the problem, but I think that when dealing with this kind of legalistic people, even a whack upside the head with a baseball bat would make no difference.
Normally, when I experience places that easily could be accessible but are not, I believe it is not done with malicious intent, but rather just ignorance. I have now learned that there is an added, and not nearly as easily dealt with, component namely legalism. Yeah, she did what was required of her by the law, but she forgot to use common sense in the process, and unfortunately you can't make laws against people lacking empathy and common sense. You can't legislate common sense...
I sent a friendly email to the director of the specific department in the city of Tallahassee, and within 24 hours I had a very nice answer that it would be looked into, and he would get back to me.
I look forward to hearing from him, I hear he is a nice guy, so maybe the parking spots will be switched around to make more sense, and not just comply with A.D.A. standards, and maybe he will be able to take the sting out of the wasp.
I will continue to use honey in my "traps" in the future, but now I know that sometimes you may place the honey too close to the nest of an angry wasp.
My challenge for you for the week is to look around and imagine you are the one with a disability. Which unnecessary obstacles do you experience, and could they be eliminated or made smaller without much effort. You might just be surprised...
Love and Honey,
P
Contact email keepinghopejourney@gmail.com
Sunday, September 4, 2011
Did I Forget?
I know I have neglected my blog for a long time. The truth is that I thought I had lost my ability to write, that I no longer had anything to say that people wanted to read. Every time I wanted to write a new entry, nothing seemed to come to mind. In the past I have often been able to just let my fingers do the walking. I would just type, and something worthwhile would come out after intense editing. I have had a lot of experiences recently, both spiritually, but I have also made some amazing friends with MD, through a foundation called "Speak Foundation." Right now Richie Sambora is playing an acoustic version of "Living on a Prayer" on the MDA Telethon. That song is so very appropriate, not only for me, but I think for a lot of people. We have to live on hope and prayers. About a month ago we went to a conference in Atlanta arranged by "Speak Foundation." The foundation was founded by an amazing young lady called Kathryn Bryant. The fact that she works full time, fights the same kind of MD as I have, and runs the foundation and manages to raise money and resources enough to make attending the conference free, is, to me, an amazing feat. Thank you Kat; you are amazing.
I had mixed emotions about going to the conference. I am not going to lie and say that I wasn't scared, I was. Until then, I had really only met three other people with MD, Kathryn being one of them. Kathryn has the same kind of MD as I have, making her even more inspirational. I was scared to see people better off than me, but terrified about the ones, whose disease has progressed beyond mine. I was afraid to see my future. I still am, but I think we all are. I met some amazing people, who all have managed to make their lives productive, despite their disabilities. None of them actually appeared disabled to me, I was the disabled one! There were some great panels of experts etc, but the best part of the entire conference, was to hang out. It was an incredible feeling to be able to sit with a bunch of girls and talk about life, about all of the similar experiences we have, as well as sharing tricks of the trade. But we were also just "girls" having a good time. I am still proudly wearing my feathers. The conference was also good for Tom; I think that finally meeting other spouses made him feel a little less lonely. I am not sure what the spouses talked about, and I don't think I will ever know, but I know that he made some connections that will last a long time if not forever. I know that God wanted me there, the week right before the conference I was so terrified that, had we not promised a friend that we would bring her, we would not have gone. I was wanted and needed there, and by having made a promise, I could not put myself and my fears first.. I am eternally thankful for that. A month later, I am still processing the weekend, and I will for a long time yet to come. I am slowly getting back my oomph and my strength to fight as I slowly begin to see that no matter what my MD brings, it is possible to have a good life, it is possible to be happy, it is possible to do things, I just need to redirect my focus even when the little voice inside of me tries to talk me out of it and tells me that it doesn't matter anyway. It matters, I have something to strive for now, I have role models to live up to. Right now I am making the promise to find a way to raise money for the Speak Foundation here in Tallahassee.
In addition to meeting other "older" girls with MD, I also met some amazingly inspirational teenage girls and their mothers. All I have to say is WOW; your strength, passion, and love touched me in ways you cannot imagine.
Thank you, I miss you, and can't wait to see you all again next year. Hopefully I will see some of you in my driveway :-), Kevin and Kim, when Kim and I get to go shopping at the Ellenton Outlets or IKEA, and Kathryn as soon as I can make it to Columbus again, or you can come to Tallahassee.
Just remember:
You'll Never Walk Alone,
P
I have attached some links below to three songs referenced in the blog, all three songs touch me.
Here is the original version of You Will Never Walk alone, made famous by Jerry Lewis' interpretations throughout the years at the MDA Telethons:
Let your Fingers do the Walking is a song by a Danish Band, Sort Sol. One of my favorite songs...
And finally of course.....
Contact email keepinghopejourney@gmail.com
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