The Christianville Spirit
The Spirit that Knows Love
July 17th, 2019-TCS # 647
I have PTLS and I am Proud, My Readers! Woah! This one is another Greeting of Mine that really means a lot! I have PTLS, ahem...(Clearing Throat) I am PTLS and I am Proud. Literally! As My Lil’ PTLS Sis’, McKenna would say! Yes, I realize that Yeah, I am sure that There are Parts of PTLS or Potocki-Lupski Syndrome that We PTLSers don’t like such as Anxiety or Easily Being taken advantaged of, but There is Something that All of Us PTLSers would not take away, Our PTLSers. It seems like Every Conference, Us PTLSers discuss things like Typical Adults do, but at The Same Time, We do talk about things in the PTLS Realm. A Couple Conferences ago in 2015, It was about Many Things including The Word, “Disability”, The Word “Mentally Retarded”. My Apologizes for that without a Language Warning! I should have mentioned at The Time that We were breaking down the Words like “Disability” Dis and Ability. You have the Ability to do something until You put the Dis before It. Last Conference in 2017, It was The First Time that I had met My (now) Lil’ PTLS Sis’, McKenna. I wrote The Following about Her in My Newsletter after I met Her. (Quoting Myself from 2017, Refer to The “PTLS Conference 2017” Newsletter, if You have not read it) “This Day, We had McKenna join us in Manning The Table. I will Tell You, McKenna is like a Mini-Me, not in Looks Wise, but The Things that She says. She only got The Diagnosis a Year and a half ago, and She embraces it like She knew She had it Her Whole Life and Truth be told, She did. As She will tell you, “Just treat me like a Normal Person” (Boy, that sounds like Me Because I say that all the Time) and That She was Happy when She was told that She had PTLS, like It was The Biggest Relief. Yes! That is what I Like to Say! By The Way, McKenna also confirms that Yes, Us PTLSers get Very Overwhelmed if Their Family takes them to Disney World. YES!! We All agreed to That One!” So, It seems fitting to Mention about All of Us PTLSers, Tyler, Stacy, McKenna, Allison, and Madison all agreed on. We all asked each other if There was Cure (And, We all know that being The Future, There eventually will be). We all agreed that although There maybe Some Things in PTLS that We may or may not like, We all would NOT Take The Cure. We agreed though, If It helped with Things a little bit (Assuming that There are No Side Effects. Which We knew that There would be) If There was a Side Effect, NO We would not take it. But, If It helped us, without The Side Effect then, Our Answer was Maybe. In this Conference, After Meeting Madison, who at First all of us did not think that We would click so well, We all did. Thinking about it, Madison, is as I told both her and McKenna, She is sort of like an “Adult McKenna” with the Same Embracing of PTLS that McKenna had as well as The Same Thought Mentality as McKenna. As I was saying, It makes me (Well, Us!) proud to say that We have, We are PTLS, It is makes us Very Proud.
So, With that Said, I am going to Rerun a Newsletter about Words that are used to Call People with Special Needs, Some are Okay to use, Others are not. This Newsletter will teach you about The Words to Say! I present to You, “Words that You call People”! Enjoy!
This Newsletter was originally written on July 15th of 2015 (Refer to Newsletter 457)
Howdy, My Readers! Thought I would do different greetings every now and then. “Howdy”, by the way, said better as “Howdy Y’all”, is What we say in Texas to say hello. Y’all, by the way is Texas Short-Hand for You All. Anyway, on to This Week’s Newsletter! So, Among the Many Things that us Young Adult PTLSers talked about at The PTLS Conference was The Meaning of Different Words that People used to refer to those with Special Needs. Also, How do we feel about “having Special Needs”? Well, The Truth is that I am aware that I have Special Needs, I embrace the Fact that I have Potocki-Lupski Syndrome, but at The Same Time, It is NOT Me. Not in the Way of Denial but, In a Way, that I personally don’t see that I have Special Needs because I am just Me, Christian. It might also help to the fact that I have had Potocki-Lupski Syndrome or Duplication 17p11.2 for My Whole Life, so really I don’t know any different. So, About The Words to refer to One with Special Needs, There are 4 Terms to use. A Disability, Handicap, Mentally Retarded or The R-Word of All Variations, and Someone with Special Needs. I, as well the Young PTLS Adults would prefer The Last One. Another One is that People think that PTLS is a Disease and I can assure you that It is Not. PTLS just happens, No Other Way to Explain It, It just happens. I see it more like it is a Serendipitous Accident, in other words, it is part of Your Destiny somehow. Anyway, Let’s Examine these Words. Now, I know that Words are Words but Many of These Words have Meanings. First Word is Disability. Disability, as My Young PTLS Adult Friend from The Conference says and The Word, Dis means, Anti or Against Something. In Other Words, You can not do XYZ. Ability, however means that You can do something. So, to refer to Me as Disabled means that I can’t do all the Things I want to do in Life and That is NOT True! Now, to be fair, There are People who are Truly “Disabled”, It is harder to do things but, They are Strong Enough to try their Hardest at it. The Next Word is Handicapped, Because I am able to Walk and Function as Typical as I can, that does not apply to Me. Respectfully, There are People that are Handicapped, even those that Do not have Special Needs. The Best Thing that You can do is ask if They need Help, if They do then, Help them and Mission Accomplished, They will be Grateful to You. If Not, then that is Okay too. Now, Here comes a Word that I do not like to Say Often, nor do I like to be called. Now, This Word comes from The Fact that People like to Compare Kids that have Special Needs versus Those that Don’t and Sometimes, It turns Ugly. We refer to it as The R-Word, Retard (Sorry Kids!). Now, The Word, “Retard” is actually a Cooking Term. You Know, when You are cooking something and The Fire from The Pan gets too High, You have to retard it. This is The Pleasant Way that I see that word’s use. However, The Government at one time used the Word “Mentally Retarded” or “Mental Retardation” to mean Someone with Special Needs, doesn’t sound too bad, right? After Rosa’s Law, It is now “Intellectual Disability”. Now, You drop The Word “Mentally” off That Phrase and that is when It is meant for Harm toward those with Special Needs. People say it in a Funny or Stupid Way, like “Ohh, That’s so Retarded” or “Your So Retarded” (pointing at Whomever did something Stupid, not meant toward Someone with Special Needs). I had a Friend that said that a lot and It annoyed me each time He said it because Said Person had Special Needs! Luckily though, There is a Campaign out there called “Spread The Word to End The Word” (STW, I call it for short) It is at www.r-word.org, Sign the Petition and Stop using The R-Word! And, finally, The Phrase that I would rather be referred to as “Someone with Special Needs” because that is Me, “Someone with Special Needs”, better yet a “A Person with Special Needs” because after all, I am a Person, just like You. A bonus with This Phrase is that it applies across The Board and does not in any way Offend anyone or Make Someone feel Different. So, What about The Other Words, Can I use them too? I would prefer that You not, but If You have to, Change The Words around so They sound better. Disability, How about Differently Abled (regardless whether They are actually “Disabled” or Not). Handicapped, That One can not be changed much because it applies to those are a Truly Handicapped, but Don’t use it on Me because I don’t see myself as “Handicapped”! Mentally Retarded, All Versions of The Word should be Taken Away except for The Original Meaning, which is for Cooking. and, Someone, Person, or People with Special Needs is probably the Best Word to use. All in all, The Point here is that I am just like You. Yes, I may need a bit of Help in certain areas and Treated Kindly, but I deserve to be treated as if I was like Everyone Else. No Comparing, No Name Calling, and PTLS is NOT a Disease, It is Only a Label!
Thanks for Reading The Christianville Spirit. We are all part of The World, We should Treat each other as Human Beings!
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