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Thanks Mark for posting this touching post. I'm sorry for you and your family about your mom's condition, and I said a prayer for you. But thanks again for sharing this. I believe it is through moments like these that sometimes God shapes us profoundly. Henri Nouwen's image of the Wounded Healer always sticks with me at times like these. We can heal others through our own personal wounds. Blessings.

posted in: Mom's Dementia

kelib, thanks for your concern.

posted in: Mom's Dementia

I'm sorry Mark, God bless you

posted in: Mom's Dementia

Yea enough of the self pity. i am at your service and again thanks for acting for Jesus when you guys brought me back from my self induced pity.

kelib, pleased to "see" you again!

I'm Back,

A2A means Accessible to All.  This is a resolution adopted by our General Synod, UCC.  It has yet to grab hold of people in our churches.  However, at our recent national conference addressed it along with other issues pertaining to mental health issues.  Lots of info at www.wideningthewelcome.com.  You also go to www.firstcong.net where you will read more about the covenant that we have adopted. 

Good questions!

ADA is a common acronym used in the US for the Americans with Disabilities Act.

A2A is a resolution passed by the 25th General Synod of the United Church of Christ of which Alan Johnson is a pastor. Perhaps Alan could say more about this.

The Christian Reformed Church has passed similar resolutions including

Also, individual churches are encouraged to adopt a resolution on disabilities to commit themselves to full inclusion and engagement with peole with disabilities. Here's an example.

That is a great quote: Be kind, for everyone you meet is fighting a great battle. I don't think I would have understood the depth of the truth of that statement when I was younger, but as life goes on, well, it's obvious.

I have a daughter with many, many health issues, and she will often question me, why her? Why does she belong to an age group that seems so unscathed by illness, and yet be drowning in it herself? I don't always know what to tell her, but I will say things like, "life isn't fair" or " their turn will come" or " everyone gets something" or," you know what your pain is, they have yet to find it". These are hard things to talk with a teenager about.

By the way, what is ADA? And can someone tell me a bit about the A2A covenant?

Thanks

I have appreciated the conversation resulting from the inquiry/article I had written about the use of language,  As with most things, it does rest upon the relationships that we are able to have with each other, whatever our and their condition might be, be it situations that are apparent or unapparent.  I believe that the less helpful response is to not connect at all since we might be afraid to say the wrong thing.  Avoiding a person who is "different" from us (apparently) does not allow the loving power of the divine Spirit of God to be present and possibly engaged.  Again, creating a hospitable space that allows true conversation or an appropriate way to connect is of utmost importance. As one person said, you can ask a person who is using a chair, why she/he is using the chair, if they are willing to share with you.  As Plato was to have said, "Be kind, for everyone you meet is fighting a great battle."  It may not be apparent, but most of us are in that situation, fighting a great battle.  When we are able to connect at that level of common humanity, with compassion, there is strength and courage that comes. 

I do not believe there is the "right" language to use, but only the appropriate one.  Engaging in supportive conversation with each other may lead to serendipitious encounters.  This Friday we are going to show the movie "Music Within," the story of the beginnings of ADA.  There will be a panel of folks who will respond.  Keeping the conversation alive is a good way to continue to expand our educational outreach. 

Our church has also just voted for adopting the Accessible to All (A2A) Covenant of the United Church of Christ.  It has been a powerful process to move our congregation to learn about it and then enact it.  It is a process.  As is this conversation. 
Thanks. 

Like Ecclesiastes 3 says, "There is a time for everything." In my opinion, language matters, and what we call people and what we call the issues that people live with matters. So it's good to talk about words and language because language reflects and creates attitudes, especially in a forum like this. However, there's a time to refrain from such talk as well. When I'm with someone who is talking to several people with great joy and passion about the "handicapped people" at his church, I don't interrupt him or correct him in front of others. But I might pray for an opportunity to talk privately about "people first" language. Maybe such an opportunity will come, but then again, maybe not and that would be okay. On the other hand, if someone were talking about "crazies" and "retards" I would speak up right away, because bigotry cannot go unchallenged, or the impression is left that bigotry is okay.

‘Saying it wrong’ is something we all worry about—especially if we really care about the person or the outcome of the situation...you worry about making it worse, or offending someone, or have someone take it the wrong way.

I feel that it is very important to speak up, because if we don’t take our opportunity to contribute in whatever the issue is, then we are not going to have much credibility if/when we do speak up...much like voting, I suppose.   If we don’t bother to vote, then we really can’t complain to the party voted in that we don’t like what they are doing.

I hear this saying a lot, “words not spoken can do more damage than words said.”  Have you ever said something that was important to you to another person, only to be met with silence?  So you ask them if they heard you, and they say that yes, they heard you...and that’s the end of that topic?  It drives me nuts!  Because you are left thinking, okay...do they disagree?  Is that a ‘no’?  Do they care? 

So what to do?  For each of us, the solution is different.  I have been described as someone who does not care about being politically correct...and I am still not sure if that is a good thing or a bad thing :)  But I do know this—when we set out to do something to help; and it is right from the heart (no ulterior motives), then there is no way we can mess it up.  Here is something that I finds help me, before I go to speak, to counsell, to have those hard discussions with my teenagers, I always say, “give me the words God-this is for your glory”.  Trust in that, and speaking up becomes so much easier :)

Hello all: I checked out both links, they are now both working. Anyways, I understand the wisdom and the message behind the point of using people first descriptions. My only problem is that sometimes I get so worried about being politically correct, or even just not embarrassing myself that I would choose to not speak at all, rather than "say it wrong". I think it is more important to speak about these very important issues, than to avoid them for fear of saying the wrong thing. So I don't like to emphasize this too much. Or is this a bad attitude?

Hi Spitfire: I personally do not live with MS, but I am part of a prairie Canadian church so there is absolutely no doubt that as a church we have lived with MS. There are so many people living with it around here, some with severe forms and others with milder. In fact, a woman around here just went to India for that controversial surgery and is feeling much, much better. I am not sure how much people know about it. I am learning myself just because I am meeting more people who have MS. What is your situation?

I realize I am responding to my own post, but am doing so in the hopes of hearing from more people. I am doing this study with one other person at the moment in order to familiarize myself with it, and yet "feel safe" to share. Is anyone doing this in a group of more than 2? Did you make it an open group, or did you pick out your attendees in advance? I think the questions in the study are well worded, but I have a lot of fear of opening a can of worms and having things get negative and out of control. But maybe this is an unbased fear? I'd love to know if anyone else who downloaded this study has dared to do it, or not, and why and how. Thanks.

Hi Mark,

Thank you so much for the links...the Diversity Inc site is down for now, but I checked out the "People first Language", and so far it looks like there are a lot of things we could use to teach people about compassion.  Not just in this arena, but in life in general.  One of my favorite sayings is that your words can build someone up, or tear them down.  Many times it's not so much about what we say, but how we say it.

Thanks again!

Many other websites have general discussions about this topic as well. Diversity Inc. discusses "What are the Best Words for Disability?" for a corporate setting, which I think applies easily to church settings as well. The comments about the challenge of translating the word "disability" into other languages opened a new horizon for me. Also in this article, the word "disabled" is flat-out rejected for use under any circumstances. One other mention, Kathie Snow's articles on people first language are thoughtful and practical. 

spitfire , I can see you understand. i love the way you put things and the verses. I pray God will bless you for you have it correct. Please understand your words are the most precious I've heard in 8yrs.  Finally somebody who can relate.  Spitfire, my job was to bring these issues to someone who could take the torch and run with it.  I'm to tired.  I've been on the spiritual battlefield for too long.  I need to have some rest.  I love you as a sister in Christ and maybe i will join you later. God bless you and thanks again.

Ken Libolt

 

kelib...I would be more than happy to tell the stories of all the broken people...but I cannot do that alone.  We are all broken, kelib, in one way or another.  The judgment you place on yourself is so harsh-it is God’s place to judge who is or is not a good disciple.  And you are right, pain can blind us and crush our spirit, but that does not make us hypocrites...just human.   

I understand the war we wage with the demons of depression and this awful disease.  I understand that at certain times, we have absolutely no control over our emotions because of the activity of the lesions and the mis-firings of the messages in our brain.  There are many (too many) times in my day that I have to stop writing or reading--because I forget how for a time.  What frightens me is that although these mental mis-firings can be explained to a degree; it feels like I am an outside observer watching some form of dementia settle into my life...and then, poof!  Clarity returns for a time.  It is a disease that makes it difficult to be content and at peace with oneself. 

We should never be ashamed of that.  It is not hypocrisy that makes us feel so utterly angry with others not showing compassion...it is pain; physically, spiritually, and mentally.  No one is perfect!  We all get frightened.  Even Jesus was terrified in the garden and felt he was forsaken at the end...My point is, just because Jesus was scared and alone and cried out in anguish, it does not ‘undo’ all the things He spoke about in His teachings, or take away all He accomplished before His final hours!  Remember Paul’s promise in Romans 8:26 & 27: “The Spirit helps us in our weakness; for we do not know how to pray as we ought, but the Spirit speaks for us with sighs and groans too deep for words.”  Psalm 22:1-11 and Psalm 22:22-31 offers all of us assurance and comfort as well.

We both understand that this disease is difficult, and no one with an affliction as ours can do it alone; so, please kelib, I ask that you tell the leaders with me...together we can represent the broken ones like ourselves. 

spitfire

I'm sorry spitfire and you are totaly correct that I have been blinded by my own pain. THANKYOU for opening my eyes to my hipocracy. Could you do me a favor, could you tell everyone in leadership about the broken people like me. I am not equiped anymore to represent hurt people and God deserves  better diciples than I could ever be.

Hi Mark,

 

Just a few thoughts...

--Does anyone have members living with MS?

--What is the general concensus on people's knowlege of MS?

 

Thanks:)

kelib,

People do care...why do you think we are talking here?  I shared that I have MS as well, and I know that feeling of downright despair when I feel that people don't understand or care.  I get it.  Which is why I invited you to drop me a line-so we could connect; as Christians and as people that have the same disease. 

I am shaking my head right now...you say that there is a lack of compassion, and you don't feel any love here--that is so sad, and I am sorry you are so down right now--but I wonder if you noticed that you have showed Mark and myself that same lack of compassion with your statement?  Nobody shows love or compassion here?  Have you read what I have been saying to you?  You words prompt me to wonder why I am not important enough to respond to, or have my invitation to email acknowledged?  I hope it is not because I have MS.  Mark and I have sincerely reached out to you, and I pray that you will still take us up on our offers of Christian fellowship.  Never give up on others kelib, please.  I do hope you come back to the Network:)

spitfire

kelib,

I'm sorry to hear you feel that way, and I hope you give the Network a little more time. Spitfire welcomed the sharing of your story, and I'd like to do the same. Considering that you have been in dialogue with other people on the Network, others have been listening to parts of your story as well. As Spitfire says above, "every time you share your thoughts and experiences here, you are telling your story."

Mark

I don't think people care about my story, I made the dicision last night after investigating this site in search of a way to connect with my Christian brothers. This church has changed and I don't feel any love or compassion. I don't belong here or at my church so it is time to move on. I'm pretty sad that I feel compelled to leave after my family have been with the CRC for 100 yrs.  God Bless You my brothers.

I think that writing and commenting on this site is a way to tell your story, kelib...it may have to be in small parts, but every time you share your thoughts and experiences here, you are telling your story.  And in sharing, you help more people than you may ever know; as Mark says, many people are looking--they just choose not to comment.  Trust that your words will be read and used as God planned them to be :)  Sometimes, I wish He whispered a little louder to us...let us know that we are going in the right direction...that we have touched others with our words. 

I agree with your comment that 'people do not seem to have the time'...I think because we had no choice but to learn patience and look at life (in general) a lot differently than we did when we were healthy, that people's busy-ness really stands out to us.  It is difficult to get those around us to stand as still as we have to, and appreciate the smaller things that are going on...like looking up in awe at God's amazing stars, or watching squirrels gather up their winter stashes.We get responses like... I can't take time to watch animals!  Work needs to get done and the squirrels will not pay the bills...look at the stars?!  I have to go to bed right now and don't have time to waste 5 minutes looking at the sky!  But-that's why we keep talking/writing...and I know that our words will be of comfort to someone, adn make a difference to someone...even if we are not aware of it:)

I didn't look at the views. Your correct. Thanks for the thoughts, but I have a constant companion in the Holy Spirit. It isn't much fun but then God doesn't promise us that it will be easy. What i'm saddest about is the inability to tell my story or talk about the unque Wisdom that God grant's us in suffering. People think I need help but what I really need is a chance to matter to someone other than my family. I have a lot to give and have created my own witness ministry. Sounds dubious but it is amazing amount of oppertunities God has brought my way. Back to myself, I do need my fellow Christians and friends but everyone is to busy to follow through. I understand because I rememeber being healthy. People don't have the time.

Thanks Mark for good suggestions. I am pretty much estranged from society and church because of illness so I don't hold out much hope. I look at when you wrote it and the amount of comments, it pretty much tell s the tell. P.S. the security feature is making comment pretty difficult. I have a hard time with some mental tasks.

I am not sure that inclusion happens all in one moment. There are moments and signposts along the way that say to you, yes, I belong.

The latest signpost that I had was just recently. It was after a very long and dry period of feeling that both me and my daughter, did not belong. My daughter has bipolar II and it is treatment resistant, which means that she spends a lot of her time coping with her extreme moods at both the high and low end of the scale. But it just looks like she is a bad kid, which she is not.

A few weeks ago, after yet another painful week of 'behaviour' my daughter ended up in the hospital, certified yet again. We decided as a family that we really needed support and so we had the pastor announce off the pulpit that my daughter had been hospitalized after her latest manic episode. I was terrified of the judgement that I was sure would follow. Then he prayed for her. I was moved to tears to hear my daughter prayed for in the normal way.... no shame, just begging for God's mercy  and healing in her life. This prayer said to me,we belong, mental illness and all. Thank you God.

Thank you both for your replies. It seems to me that while there is a willingness to adjust in order to meet the needs of specific individuals, there is still a large pressure from the institution to maintain the status quo. I sense fear of change, fear of losing the meaning or truth behind the profession. It is almost a bit of an initiation and if you can't do it, well, then you don't cut it, you must not be really serious about your faith. There is a feeling that you have to make it a bit of an event in order to make sure it is not "too easy" and to weed out the people who aren't really serious about their commitment. The problem of course is that if you have social anxiety, advocating for yourself and explaining your needs even to a smaller group of just elders, could be really trying. And so those people tend to remain hidden in the woodwork, unless someone really searches them out and figures out what is going on, and helps them to navigate the situation through advocacy. And how rare is that? In the 5 years I've been in my present church, I know of one person that was helped around and through the rules. But how many more are there?  

God bless you, You know the disease we have can be a great blessing. It keeps me humble and has created a chid like faith that  makes taking our walk with God a step by step relationship. i feel pretty lucky at times.

kelib,

You are not alone!  I have MS as well...secondary progressive. 

You said, "I'm not looking for a label but for people to take me and other diabilities seriously."...  We share the same thoughts.  If  I could make someone understand what it feels like to be in my shoes for 5 minutes, I would bet that I would never hear--'but you don't look sick', or 'you look good' from that person again when I explain why I cannot drive for youth that night, or why I cannot commit to a meeting 2 weeks away. 

My reply to your original comment was an effort to give a voice to someone who couldn't speak up...you must understand the term, "brain farts"--I have them more frequently now, and it scares me to think that one day, I might not be able to express myself coherently... I guess that's why I advocate now-while I still can :)

Please feel free to contact me if you want to shoot the breeze with a fellow MSer!

Thank you  for engaging me, I was beginning to think I was by myself. I am sorry if I offended you., but I'm the damaged person with Ms and brain damage. I'm not looking for a label but for people to take me and other diabilities seriously. Some of us have wonderful "God" interactions and are treated to unique spiritual wisdom in the mids't of suffering.

kelib, referring to a person as damaged is hurtful...and even if their illness renders them incapable of understanding things we say, it does not render their friends and family incapable of understanding.  Labels can take away a person's dignity...and I know it sounds nit-picky, but able minded people need to step back and be willing to change their choice of words and learn how those words affect those around them. 

I understand that the person with the illness might not have a clue as to what the 'label' means...but if I said, "'so-and-so has X illness", and people around me heard me, they would take that to be a fact.  What if I was wrong?  What if I was in a bad mood and was being mean?  I would be hurting that person in the long run, and that is what matters.  Words are powerful-they can build us up or tear us down. 

I am not picking or attacking here, just wanting to be a voice for others:)

AJ French, the person who wrote this blog entry -- Do Justice -- wrestles with the same idea, only on a much, much more personal level.

Beautiful! Yes, one size does not fit all. This reminds me of a pastor friend of mine who had a parishioner who was a retired police officer. The officer always sat in the back row of church, and he never made a public profession of his faith, even though he was a believer and supported the church in many ways. Finally, one day my friend heard the reason why the officer never made a public profession: "You have to stand in the front to profess your faith. If I professed my faith, that would put me a long ways from the exit, and I just couldn't do it." My friend assured him that he could make his public profession of faith from the back row. Soon after, the whole church celebrated his public profession.

Yes.

We've discovered that the beloved way that we were doing things created a barrier to some and actually kept people from taking the step of professing their faith.

We had the regular practice of having the person stand in front of the congregation, respond to the vows, receive a remembrance of the profession of faith, give a testimony if they so desired, and then be welcomed by anyone in the congregation as the congregation sings 1-3 songs. All of which could be tremendously meaningful--for some. For others, it was terrifying.

So we decided to tailor it individually to the person professing. We've had people simply stand in affirmation of the vows; we've had a husband/wife elder team stand next to the person as she responded to the vows; we've dropped the communal welcome in many cases--and we let everyone know that we can adapt anything to make it an affirming rather than a threatening experience.

We still need to find a way of publicizing this generally to the congregation. But moving away from a "one-size-fits-all" attitude has helped. I think too that when people see the church accommodating its practices to the needs of those in the Body, they catch something of the Spirit of Christ who did the same for each of us.

Has anyone thought about anxiety disorder and the way we traditionally do profession of faith?

This is a strange comment. Of course it matters, because truth matters. Secondly, by definition, victims are hurt by the actions of others, so of course they would care. We don't need to add to people's pain by our own lack of understanding. Taking the time to understand people's precise situation is the motivation behind "labelling". Understanding that we are all damaged people is a good perspective from which to start.

Great insight! The people with disabilities that get the most media coverage (and let's throw the Jerry Lewis telethons into this mix too) are those who, it seems, consider disability as an intruder in their lives, not part of their identity. At least, this is the narrative that the media seems to understand. I would guess that most in the media do not understand people who embrace a disability as part of their identity in the way that civil rights leaders embrace their ethnicity as part of their identity. Therefore, disability also is not portrayed as part of the diversity of human nature, but only as an intruder that must be overcome.

What differience does it make whether a damaged person is properly labeled? The victim doesn't care as long as it's not hurtful.

Thanks Mark for asking this question. Indeed, our culture has reduced diversity to ethnic diversity. It is largely, as you say, caused by the media.

Another reason is possibly the advocacy of social movements or causes - the momentum or power of a lobby or movement. The ethnic diversity cause can be traced back to the civil rights movement in the 60s, spearheaded by such powerful and charismatic leaders like Martin Luther King Jr. Their movement is widespread and has captured people's imaginations over the years, and entrenched in folklore, and cultural memory. We don't have anything similar, not that I know of anyways, in regards to disability diversity.

There are famous people with disabilities in our culture but if I am not mistaken they tend NOT to advocate for people with disabilities to be included, but advocating for cures. Two that I can think of is Terry Fox in Canada, who is entrenched in Canada's cultural memory but Terry Fox was running for a cure for cancer. And the other one is Christopher Reeves (a.k.a. Superman) as a quadriplegic (sorry if I misspelled here) advocating for medical research. So, our culture collectively lacks the imagination to think of diversity as including disabilities because their collective imaginations and collective memories have not been shaped that way.

My church makes sure that the building is accessable. Beyond that, not much.

As sad as it is, I suspect it comes down to the simple fact thay "they" make us uncomfortable.

Who's "they"?

Anyone who's different, who forces us out of our comfort zone, who requires some kind of altered approach.

This past weekend I spoke at a retreat--one of the guys had a rare illness that causes inappropriate vocalizations at times. Now remember that I'm in a wheelchair, that I depend on accommodations and grace, that I should get it. And still I had to work to avoid feeling irritated during the first session because my wonderful words were interrupted!

Isn't that pathetic?

God reminded me of something important--IT'S NOT ABOUT ME!

He was a good guy with a big heart, and we had a couple of interesting conversations. He isn't his illness; he's a child of God.

Why is that so hard to get through my thick skull?

Rich Dixon

http://www.richdixon.net/bouncingback/

What Michael B wrote above reflects my thoughts precisely. Indeed a new and helpful perspective for me. Thank you!

Judy, What a beautiful story. Thanks so much for sharing this. Mark

While growing up I remember my dad telling us kids that --- should we ever see anyone at school who didn’t have a friend, we were to go over and befriend that person.  And we were always to be kind to those who have handicaps.

So when three deaf girls joined my all hearing 6th grade class, I knew in my heart what dad would want me to do:  befriend them.  And that is what I set out to do.  At the age of 12, I went to an evening class (which was actually taught by one of the deaf girls’ mom) to learned sign language.  With one of my older sisters helping me, I went to class and learned and practiced sign language for quite some time.  After lots of practice, I made three new friends. 

Not long ago, I had a sign-language conversation with one of my deaf friends of forty years ago.  She and I were back in our home church and we had to opportunity to reconnect our lives after all this time.  What was amazing to me and to others standing nearby, (including my deaf friend’s mother) was how well I could remember how to sign.  I’m sure that was a God-thing.

Why was it so important to my dad that I included and befriended persons with special needs?  Although he never said it, I knew.  It was about the love he had for his own son who was born severely handicapped.   Joel, who now would be 59, didn’t live beyond three months of age.  But his short life brings a strong and healthy message:  love people, especially those who have special needs.  I am still gripped by my mom’s story of how she took a five pound baby home from the hospital who died three months later --- at the same weight. 

My dad met his own handicaps and disabilities during the last several years of his life.  Because of Parkinson’s disease, my dad’s own ability to walk, to care for himself, and to live independently caused him to be the recipient of his own teaching:  be good to those who need a friend, especially to those who have handicaps.  We as family did the best we could.

Three years ago my dad was set free.  His time was over – his suffering ended – his handicap was healed.  Yes, God called him home.  His homecoming was special, I’m sure, because he was reunited with his son – his son he hadn’t seen for 59 years. 

I imagine Dad and Joel, standing tall and standing strong – reuniting – fellowshipping – and befriending each other – all the while… 

Standing in the presence of the One who healed them.

 

Judy De Wit

 

You're really talking about the "nuts and bolts" level of caring for people. Interesting that we'll send a missionary around the world (as we should) but ignore the simple needs of someone right in front of us.

When I first read your article, I thought, "How far do we have to take this?"

The answer, of course, is "As far as Jesus went."

Rich Dixon

Yes, I'm glad you mentioned that Heather. My church also recently began offering gluten-free elements. Even to those of us who aren't allergic, it sends a strong message of 'we care'.

Without a doubt, all of our elements are 'glutten-free' given their small size. Oh no, that's spelled 'glutton'.  ;-)

Great point. I've heard of people who have brought their own gluten-free bread from home. It's so much better when the church leaders accommodate this need. Otherwise, if someone with problems with gluten forgets to take their own bread, they cannot participate with the others. Then communion isn't really communion.

Last week, for the first time, our church offered 'glutten free' wafers for communion. We knew of one person who would use the wafer due to an allergy.

A few things to remember. Each wafer needs to each be placed in a little 'zip lock' baggie, due to the allergy. It cannot touch the bread on the plate. You will need to be careful during the 'prep' time of the sacrements too.

The glutten free wafers were quite expensive, so the little baggies came in handy for keeping the unused wafers for our next communion.

Heather-Oakville, Ontario

 

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