Satisfied...?

Imagine a man with an intellectual disability. Lets say he is like 45 and doesn't live at home. Just with that description, many people might be able to describe what his life is like. You might imagine...

-he lives in a group home, probably with a roommate only members of the same sex living there. The home is probably in the community but there is little contact with members of the community.
-most of the people in his life are paid to be with him. They are service providers. The friends he has are either those who live with him who have the same sort of life or those at his day program. He may have family contact but it isn't very regular, and may be none at all. He has pretty much no friends who are regular community members. Involvement from community members is rarely seen, rarely facilitated and probably shunned.
-his "work" consists of  either game playing or busy work or "Mickey Mouse garbage (the way Dr. Marc Gold described much of the 'work' provided to folks in these kinds of programs) as the demands and expectations for growth are so minimal.
-probably the leisure recreation activities in his life are watching TV and maybe bowling (all disabled people like to bowl, right? you would think so rather than that being a reflection of the lack of creativity in teachers). He rarely gets to go outside.

The problem with the above is not that this is typical although that is a problem...the problem is that we are satisfied that this is the way it is! We know this is the reality and we don't care, or think it is fine, or just don't know what to do so we do nothing. Human services workers are satisfied, families are satisfied, churches are satisfied. I think all these groups are satisfied because the current system makes minimal demands of all of us. I think the state agencies like the separation from the community because it facilitates their tendency toward making decisions that are administratively convenient for them. Compartmentalization is easier for group management and regulation of people. Integration of people into the community only makes life messy, more difficult, more REAL.
Peoples lives are complicated.  When we make their lives simple, we restrict their lives making them regulated and unreal.

Don't be satisfied with the way things are.

To the Christian I would say, "Don't be conformed any longer to the patterns of the world but be transformed by the renewing of your mind" (Romans 12:2). Does the current experience of persons with disabilities as regulated by human services represent a Biblical understanding of disability? How  would a Biblical replacement narrative about disability and who people with disabilities are change the typical scenario above? What can you do to help to facilitate that change?

McNair

What is relevant?

We had a discussion in one of my classes the other night about the medical and social models of disability.  You can find out more about those models by searching this blog. But something that came up, that I kept reiterating is that only what is relevant should be relevant. A critical problem with society is that they think some characteristics of people are relevant, when in reality they may or may not be.


If I am riding a horse, the fact that I wear glasses is irrelevant. If I am talking to a friend about whether he should or should not get bifocals, the fact that I wear glasses is very relevant. If I am meeting a friend at a restaurant, the fact that she uses a wheelchair is irrelevant (or at least should be, and generally speaking in the US it is irrelevant). However, if I am asking her to discuss how her disability has impacted her desire to be employed, that she uses a wheelchair is very relevant.


The key is to keep the relevant relevant and the irrelevant irrelevant.


If I have an intellectual disability and as a result I am segregated, that is making what should be irrelevant relevant.
If I use a wheelchair and because of that I cannot find a job, that is making what should be irrelevant relevant.


It is critical for people to look on their neighbors wisely. If something is considered relevant for some reason, it should be logical and defensible. So much of the discrimination people face is the basis of making irrelevant things, ethnicity, gender, disability relevant to judgements about people when it should not be so.


Yes there are aspects of human impairment that are best addressed by a medical model approach. There are other aspects that are best addressed by a social model approach. It is not one or the other. As Tom Shakespeare has related, he cannot blame society and discrimination by society for a bladder infection resultimg from his impairment. He can blame society for making personal characteristics relevant as a cause for discrimination.


The key is understanding the difference and only making personal characteristics relevant when they should be relevant.


McNair

"Alone yet not alone" Press Release from Joni and Friends

 

Joni Eareckson Tada Surprised at Response to Original Song Oscar®-Nomination

Joni and Friends founder asked to record ‘Alone Yet Not Alone’ theme song by producers of new faith-based historical film

 

AGOURA HILLS, Calif., Jan. 23, 2014 – Joni and Friends founder Joni Eareckson Tada was as surprised as the rest of the nation to learn that among this year’s Academy Award Best Original Song nominees was one that involved her. Tada was honored by the invitation from the film’s producer to give voice to the eponymously titled song, “Alone Yet Not Alone,” at the invitation of the film’s producers in the Fall of 2013, and was merely looking forward to its nationwide release in theaters in June.

That all changed, however, with the announcement of the nominees last week, bringing attention from across the U.S. to the song and Tada’s performance. Those not familiar with the name Joni Eareckson Tada or her ethereal voice have been surprised to discover that she has been doing her singing from a wheelchair for more than 47 years, having been paralyzed in a diving accident in 1967 at age 17.

Tada recalls the occasion when she was invited to record the song for the film. “Last year when I spoke at the closing session of the National Religious Broadcasters’ Convention, I sang several hymns as part of my message,” Tada said.  “In the audience were some people connected with Enthuse Entertainment, the producer of Alone Yet Not Alone, who later asked if I would be interested in recording the theme song for the movie. 

“When I heard the simple, humble ballad, I wanted to record it.  I really resonated with the words – after all, I sit down in a stand-up world and often feel ‘alone;’ but of course with my faith in God, I'm never really alone!,” Tada explained. “The Bible is filled with stories of God picking ill-equipped, unskilled people for places of great influence, which is how I feel, as a quadriplegic, singing an Academy Award-nominated song.” 

 There has been some surprise in industry circles that a relatively unknown, faith-based historical film has received such attention, but those involved have said the song is deserving of such attention, as both a musical work and for its integral role in the film. “Alone Yet Not Alone” is set in 1755 and features two young sisters who are kidnapped by Delaware Indians during the French & Indian War. It is their faith and a family hymn – “Alone Yet Not Alone” – that help them stay strong and endure such hardship.

Tada hopes to use the recent attention on her and this song to increase awareness and further the work of God through the ministry of Joni and Friends, which she founded in 1979.  “Can you imagine how this might encourage other people with disabilities?  It’s all about ‘God's power in our weakness,’ and I love the chance to advance that message!,” she said.  

 

Tada’s influence began following the release of an autobiographical book and subsequent movie about her life, both entitled “Joni,” which provided  encouragement to other individuals with disabilities across the nation and around the world.  he and a few friends – many of whom had helped mentor her spiritually – realized from the mail and phone calls pouring in that there was a significant need for such a ministry.

 

Following the establishment of Joni and Friends to help meet that need, Tada went on to have an important role in determining how individuals with disabilities would be treated in public, in the workplace, in schools, etc., as part of the committee involved in making recommendations for the Americans  with Disabilities Act.

Since that time, Joni and Friends has expanded greatly beyond Tada’s wildest expectations as far as the number of people they are able to serve and the variety of services they provide, but never deviating from the original purpose of sharing the hope of God’s love with a segment of the world’s population that is often overlooked and ostracized.

“From the beginning, we focused on developing programs that would help meet both the spiritual and practical needs of disabled people and their families,” Tada said. “We’ve grown to include an important emphasis on training and equipping individuals to serve the disability community, as well, realizing this would greatly accelerate this type of ministry around the world.”

Tada can be heard daily through her radio ministry on Christian stations around the country, including both a five-minute program, “Joni and Friends,” and a one-minute program based on her daily devotional, “Diamonds in the Dust.” Regular listeners are familiar with Joni’s beautiful singing voice and love for hymns, as she often slips them into her recordings. Both are available online at www.joniandfriends.org/radio. She also hosts the “Joni and Friends” television show available on numerous networks and affiliates here in the U.S. and abroad.

About Joni and Friends International Disability Center

For 35 years, Joni and Friends International Disability Center has worked to accelerate ministry to the disability community, offering a wide array of life-affirming programs to people with disabilities around the world. Joni and Friends does this through the Christian Institute on Disability; the International Disability Center; international radio and television programs filled with inspirational stories; Wheels for the World, which every year sees thousands of individuals receive wheelchairs and the life-giving message of the Gospel, and Family Retreats, where families affected by disability learn they are not alone. 

"I was in prison..."

A dear friend of mine emailed me with this today.

Phil 1:12

I want to report to you, friends, that my imprisonment here has had the opposite of its intended effect. Instead of being squelched, the publishing of God’s word has actually prospered.

This is Paul's response to his imprisonment.  He was active in sharing the Gospel with those who held him captive. But there was something about my friend's email that struck me. My friend is a man impacted by physical disability which causes him, unfortunately, to spend much time alone. But he has used his time alone to have a ministry, through his weblog, of sharing God's word such that the "publishing of God's word has actually prospered." He has an international following. He delights in telling me what country is "in the lead" regarding the visits he receives to his postings. His time he has used to develop a ministry of God's word.

He also told me of how the subject of my previous post, Joni's singing of "Alone yet not alone" describes how he often feels.

There are too many people in general, but people with disabilities in particular, who are lonely. Yes they may creatively use their social "imprisonment" to prosper the publishing of God's word like my friend. Whether that be through blogging, or prayer, or other means. Yes they are "Alone yet not alone" because of God's presence with them. But I wish they had people in their lives who spent time with them and befriended them.

We, the Christian Church, need to do better in this area. To continue to use the sad metaphor of "prison", Jesus in Matthew 25:36 states, "I was in prison and you visited me." Prisons can come in a variety of forms.  Different ways in which people are separated from those around them. The social consequences of disability can be a form of "prison". We are exhorted by Christ to visit HIM in prison. What we do for our fellow people is "done unto Me".

If you don't know someone in "prison" you need to know someone in "prison" and you then need to visit them.  May God make it so!

McNair

Oscars: 'Alone yet not alone'

Something marvelous is happening this oscar season unlike anything I can remember.  A song from an obscure move that grossed $134,000 during its 21 day release, and sung by a 64 year old quadriplegic woman was one of the 5 songs nominated for an Oscar. Add to that fact that movie is a Christian movie, and the odds of such a nomination become even more numerically inconceivable.  One must just shake their head and wonder what this is about.

Joni Eareckson Tada, the singer herself said to The Hollywood Reporter, “I’m the least likely candidate to record a song for a movie, I’ll tell you that up front, so it’s amazing,”
But I will tell you that I am someone who has had the pleasure of singing with her! No, dont get the wrong idea. I am among probably thousands of others who have simply been with Joni and have shared in her spontaneous singing of a favorite hymn. She loves music, particularly music that glorifies God! And, she cannot help but sing it.

But observers also can't help but wonder at this nomination. From my own life, when things happen that don't make sense to me, I expect something from God. So, in this nomination, I expect something from God!
Perhaps it is that God just chose to honor a dedicated servant who has been a model of trust through the most challenging of experiences that human life can throw at someone; quadriplegia, cancer. Joni is worthy of such recognition. One of the greatest aspects of "Alone yet not alone" is that Joni is real, sharing her real experience with God who has supported her throughout her life. You can hear the honesty and integrity in her voice. She is not just singing a song, she is telling her story. You can see it in her smile at the end of the video.
Perhaps it is that God is bringing attention to the ministry of Joni and Friends. The Christian church is awakening to the inclusion of persons with disabilities like never before. Joni and Friends has had a lot to do with that. The article linked below speaks of giving out wheelchairs, which is true. At last count, the 100,000th, custom fitted chair will soon be dispersed.  These chairs are donated, reconditioned till they are like new and shipped around the world. They represent 100,000 lives that were changed with mobility and dignity where there perhaps was none before. Growing this and other work of encouraging families and individuals with disabilities themselves, training leaders and advocates and teaching about a Biblical perspective on disability might also be the point of this recognition.
Perhaps it is a witness to the secular world about who God is. There are few events like the Academy Awards that are more secular in their celebration and focus. It is marvelous that a weak, quadriplegic, Christian, woman, has set the awards world on it's ear a bit, wondering how this could have happened. As Joni herself prays in the video, God chooses to use the weak to accomplish his purposes. Joni's weakness will be on display which points to God's power in technicolor!

I have no idea whether the song will win, but I know that God will accomplish his purposes. I personally think it is breathtaking and fun to experience this nomination. I think if I could see the face of God, He would wink and say that in spite of everything, of so many things that appear to be moving to the contrary, "I am still in control!"

'Alone yet not alone' story and link to video