a monastic’s reflection on Alzheimer’s (his own!)

https://armsopenwide.wordpress.com

The Orthodox Peace Fellowship has a discussion list on which the following was recently shared. Since it relates to what I wrote about how most of us will experience disability at the end of our lives in this world I decided to share it, omitting the names aside from the first initial.

It is a piece of priceless sanctified thinking. Think about it- would you rather die suddenly without reflection concerning your life and stance toward God or experience a disability which gives you time to reflect, especially on how fleeting the “treasures” of our present life are (which include our own human abilities given to us by God)?

Will we say with Job, “The Lord gives, and the Lord takes away; blessed be the Name of the Lord?” Or will we, as the poet Dylan Thomas wrote, “rage against the dying of the light?” (from the poem, Do Not God Gentle Into That Good Night)? Fr. A. shows the way to the never-ending sunrise:

This is a copy of a message I sent to good friends here who were
inquiring about the status of my Alzheimer’s Disease and were
wondering if it is even even appropriate to ask. After I wrote it I
though I would share it with you and a few others, and you may
share it with anyone you think might also be interested. Here is the message, below:

It’s quite all right for you to ask. I am very open about my illness, as is Gerondissa, and we do not hide anything or keep any secrets. And I have very little false pride about my limitations any more–I’ve already been through “that phase” and have been able to embrace my disease in the shadow of the Cross. More than that, I have begun the slow process of climbing up onto the Cross with our Lord, and sharing now
in His Passion. This is incredibly sanctifying; I don’t know how else to describe it. So although I don’t talk much about my illness, it’s not out of secrecy or pride or sensitivity, but only because I am keeping the Lord on the cross as close to my heart as I can. And He will get me through. It has frankly become as much a spiritual experience as a mental one.

So, I want to take this opportunity to share with you and Tim, since we haven’t really talked about it much. I have discussed it on several occasions with Dennis and Justina, and they are wonderfully and appropriately sympathetic and helpful. They are more than relatives; they are good friends. I will talk more about it with my other siblings when we have a family reunion this summer. My children are completely on the same page with me already, but for them it is too painful to talk about much.

This illness is the oddest feeling of being somehow detached and experiencing a slow metamorphosis from being one person into another; not dramatic, but disconnected, and yet still able to pray, read, do email, recognize others (although my short term memory and my malapropisms have gotten worse over the last week). But at the same time it’s oddly not depressing. (I went through the depressingstage last year.) In fact, I woke up this morning with Finn having crawled up and curled into my left arm, and at the same time I had the most intense longing for heaven, which made me very happy.

The neurologist told me some time ago that there is a small
percentage of AD victims who in some way consciously “know,” all the way through, what is happening to them, and he thinks I am one of them. I don’t know if that’s a blessing or not, but I do think it’s a blessing that I can share with others the various stages of this illness as long as possible. That sharing is helpful to me, and perhaps for others if they see that there is a spiritual way to “do” something that is otherwise so awful.

As you and Tim know, Alzheimer’s is a long and slow process, for which reason it’s called “the long goodbye.” But I read Patty Davis’ fine book about her father, President Reagan, “The Long Goodbye,” and she said that he remained cheerful, happy and polite as a three year old, right to the end. And I also know about the Alzheimer’s of some great and holy Elders of our time, who were able to serve Liturgy and say the Jesus Prayer right to the end, even when they nolonger recognized anyone else. So Alzheimer’s doesn’t have to be grueling and ugly, the way it is so often portrayed. I think that the perceived “terribleness” of this disease is at least in part a reflection
of our incredibility morally and spiritually bankrupt culture.

With drugs and medical help, and very good care from Mother
T., I have had three years of relatively slow deterioration,
and I think that “slowness” will continue yet for some years. Right now is a different phase, though. I am very blessed to be in monastic life and here with Mother and the Fathers and Brothers just down the road, who also stay in contact and are very affectionately supportive. I feel safe and well cared for. There are many in my condition who cannot say that. Mother is a good friend, caretaker, intellectual and spiritual companion, but you and Tim will have to help her to harden her heart as time goes on and my symptoms become worse. I have
already spoken to her about this, too. She is very tender-hearted and quietly suffers over my illness, although she’s no drama-queen about it, as you can well believe. That’s not her style. She only quietly says, “I don’t like it,” and that, coming from her, actually says a great deal.

From a purely spiritual standpoint I want to share with you the insight I believe God gave me from the time of my diagnosis. My greatest and overriding sin — indeed, even vice — has always been pride. Pride of mind, of “knowing better” and judging others inappropriately, sometimes thinking of them as being less than I am. This is a most grievous sin, and one that many people don’t even recognize in themselves, but it is the one sin that will, above all, consign us to hell if we don’t overcome it! It was the sin of Satan, the sin of Adam and Eve.

I understand fully how I got this way. I have throughout my life beeninordinately proud of my mind, my intellect, my ability to thinkclearly about difficult and complicated things, to speak and write well, understand, process, and explain difficult things, etc. Growing up, I wasn’t good at sports, I wasn’t attractive to the ladies, I couldn’t dance, I was an intellectual bookworm and loner, I had no other skill than my brain, and I used it and developed it as far as I possibly could, although actually I wasn’t particularly academically brilliant, as all of
that just seemed like some kind of superficial “game” to me. But that was my path in life. And although I have put these gifts to the service of Christ and the Church, as best I could, the pride has still been there.

Now the Lord has offered me a chance to mortify and humble down that pride, by accepting without complaint the slow crumbling of my mind. And I do accept this, with my whole heart, even if with the occasional tear, as a gift from Him for my salvation. So it sometimes “feels” as though this dying of various parts of my mind is also a dying of self, a dying of ego, a dying to pride. And isn’t that the purpose of spiritual life, after all, anyway? The Lord looked down and saw that I wasn’t going to do it any other way, and so, because He loves me very much (unworthy as I am) and wants me to be with Himforever, He offered me this incredible opportunity to die to self. I see
this as a great, if sometimes painful, blessing!

Well, these are my few thoughts about it. Never hesitate to ask mehow I’m doing. I will tell you honestly. But never feel sorry for me,or pity, as I do not for myself, but rather rejoice for me that I am on a sure path to the Kingdom of Heaven. I believe this with all my heart.

— Fr. A

Some thoughts on “Principles for allocation of scarce medical interventions”

https://armsopenwide.wordpress.com

This is in reference to the article referred to in my January 15th post, Health Care for the Disabled? It was authored by Govind Persad, Alan Werthheimer,and Ezekiel Emanuel, one of President Obama’s top health care advisors. [Lancet 2009; 373: 423-31 Department of Biothics, The Clinical Center, National Institutes of Health, Bethesda, MD USA (G Persad BS, A Wertheimer PhD, E J Emanuel MD)] http://www.docstoc.com/docs/17645393/Principles-for-allocation-of-scar

The article reviews the major approaches to the situation (including the DALY- Disability-adjusted life-year allocation) and recommends what the authors call the complete lives system.

Now it is not good to take  others’ words out of context. The authors, in their conclusion, consider objections to their complete life system. (P. 7) This is an important section of the article for understanding their conclusions. I cannot stress enough how important it is to read the whole article. But when one has done so, pay careful attention to this section. Since this article is marked Public Domain, here is a sentence for consideration:

Some people believe that a complete life is a universal limit founded in natural human capacities, which everyone should accept even without scarcity. By contrast the complete life system requires only that citizens see a complete life, however defined, as an important good, and that fairness gives those short of a complete life stronger claims to scarce life-saving resources.

I offer these observations for your consideration as an ordinary U.S. citizen who will feel the effects of this approach at some point in my life or the lives of my loved ones. I acknowledge that medical people are indeed much more aware of the full scope of the dilemma than I am; nevertheless I feel the responsibility to respond to what the experts are planning for us.

The Young and the Old

Except perhaps for the very young, young people in general are healthier than older people and require, in general, less medical interventions. I find it curious that this is not addressed. Our society is a society that values youth and youthful energies, and sees the adventures of youth as the fun time of life. Could it not be said that we even worship youth and value those “fun times” as the best times of life?

“Flee also youthful lusts; but pursue righteousness, faith, love, peace with those who call on the Lord with a pure heart.” (2 Timothy 2:22)

Older people have in times past been seen as those to whom the young turn to for wisdom concerning the meaning of life and the solution of life’s difficult questions. But now older people, (many of whom, in our society, admittedly, have applied themselves more to acquiring goods than wisdom, unfortunately) are often viewed as people behind the times (lost in the dizzying pace of technological advance), and in their last years, as burdens on society. But perhaps the experiences of older people, even if they have made mistakes, (I, on the verge of 55, sure have!) while different, have something to say to younger people- an under-utilized resource.

“You shall rise before the gray-headed and honor the presence of an old man and fear you God” I AM the Lord your God.” (Leviticus 19:32)

Here’s a scripture portion from the Orthodox Christian Old Testament that speaks to the issues involved here:

There was once a man pleasing to God and loved by Him, and while living among sinners he was taken up. He was caught up lest evil change his understanding or deceit deceive his soul. For envy arising from lack of judgment obscures what is good, and a whirling of desire undermines and innocent heart. He was made perfect, for in a short time he fulfilled long years, for his soul was pleasing to the Lord; therefore He took him early from the midst of evil. Yet peoples saw this but did not understand, nor take such a thing to heart.

(Wisdom of Solomon 4:10-14, The Orthodox Study Bible, Thomas Nelson, 2008, p. 897.)

The notes in my Orthodox Study Bible say this refers to Enoch (Genesis 5). But the words also find application toward a definition of a complete life: a. It is not measured in years. b. The peoples did not understand. That is, those that are not of the people of God. Here’s the previous passage:

But though a righteous man may die before his time, he shall be at rest. For old age is not honored for its length of existence, nor measured by its number of years; but discernment is gray hair for mankind, and a spotless life is the maturity of old age. (vv. 8-9)

This is not to say that we are to devalue older folks that we do not deem wise. (The passage could be understood that way.) The point that I see in this is that simply measuring people by years lived is not God’s way of measuring people.  One dying young, somehow, painfully for loved ones left behind, can fulfill God’s purpose for themselves in a shorter life.

The authors of the article, in effect, are saying God (assuming they believe He exists) is not fair in taking certain people before what is considered the full span of life, and are seeking to compensate for this. But as we believe that our God is all-wise, we cannot support a systematic shifting of resources from the old to the young as a way of compensating for God’s unfairness. Is it too strong a statement to say that to do so would be playing God?

Of course, if, say, a 20 year old person needed a new heart and I, at 55, also needed one, and there was one available, I would defer to the younger person. Surely Christ, who gave Himself for us, would have us who follow Him to walk in his footsteps in lives of self-sacrifice.

Would I do it for a 75 year old? According to my Faith, I believe I’m called to be willing to defer here as well. Of course, the 75 year old would probably have something to say, too. That person’s prognosis and his spiritual state enter into the decision. Is he at peace with God? If so, he may be ready to move on. I would also be consulting my spiritual father and others whose counsel I trust in such a situation.

Here’s an excellent reflection on this matter, entitled “Moral Pluralism and the Crisis of Secular Bioethics: Why Orthodox Christian Bioethics has the Solution”, by Dr. H. Tristam Engelhardt, a physician and Orthodox Christian bioethicist:  http://www.antiochian-orthodox.co.uk/Publications/engelhardt-bio-ethics.pdf

Now if a 40 year old and a 60 year old, and their families, would all be demanding that heart, someone else would indeed have to make a decision. The authors, in all fairness, are limiting their recommendations to situations of scarce medical resources, in which a third party may have to make the decision. If the authors’ “complete lives system” would be restricted to such situations of scarce resources, where a third party has to decide, it has a certain logic, from a human standpoint. But I personally have no idea how often such situations actually happen.

Medical decision-making

The authors write of

a complete life, however defined

Now Christ shows us what authentic humanity is. Man, created in the image of God,” is called to restoration to the likeness of Christ, the “visible” of the Father, to sharing in the energies of the Holy Trinity. As St. Peter writes, we are to become “partakers of the Divine nature.” (2 Peter 1;4) We can know God, but not exhaustively; we will never understand Him in His essence, which will remain beyond the comprehension of all created beings.

If our God (and by extention, man,  made in His image) remains in certain ways a mystery to those who have received Light from above concerning their nature and purpose, how much more is the human being a mystery for those who recognize no settled definition as to what we human beings are,  or for the purpose of our existence? Should not the very fact of their lack of clarity on these large questions cause them to pause before developing such plans?

And why should we be a willing and obedient flock of sheep for shepherds without clear vision?

And while it must be said, in all fairness, that the authors are limiting their recommendations to situations of scarce medical resources, where a third party may have to make a decision, such policies could easily become more generalized. Could not the step from situations of scarcity to questions of cost easily be taken by those whose focus is the economic “bottom line?”  (“How much is this person’s extended medical treatment going to cost?”)

It seems to me that the struggle in our society in this matter is increasingly between persons and their families making hard end-of-life choices and certain health care professionals who want to make the choices for them, according to their  bioethical conclusions- and not necessarily in situations of scarce medical resources. See the following for examples of this: https://armsopenwide.wordpress.com/2009/07/18/euthanasia-and-futile-care-stories-commentary/

Medical decisions are often most agonizing. Obviously people are not meant to be perpetuated biologically with no brain waves by machines. Conversely, alleviation of pain (in some cases by substances that can hasten death) must be weighed alongside the need of a dying person for a time of spiritual reflection as he approaches the end of his life. And there is so much more involved. Who decides?

This struggle is also between those who believe that life is a sacred gift (which means for Christians, not only biological life, but divine life in Christ) and those who look at people according to how useful they are. This view, while critiqued in the Lancet article, is also somewhat present in it, in my opinion.

Beyond Roe versus Wade,  judicial decisions allowing physicial-assisted suicide are spreading in the U.S.- first in the state of Oregon, then in Washington, and now Montana seems to be opening this door.

Where the fallen world sees a chronically ill person as a burden, the Lord Jesus sees a person counted as “the least of these” whom we are called on, in the strongest terms, to serve. This is, as I said before, the Orthodox Christian bottom line- St. Matthew 25.

Lord have mercy, on me, a sinner, who has not always lived up to these words.

I would also ask all readers for forgiveness if I have treated these matters inadequately and simplistically, neglecting important aspects.

But the matter pertains to persons with disabilities, which most of us will be at the end of our lives in this world.

“Pray Constantly” (Roe versus Wade)

Life!

. . .We ignore our poor and elderly, the dispossessed, the mentally ill, the stranger in our midst. We are too busy pursuing our own 15 minutes of fame! We have no time to spare to help others, to visit the sick, to comfort the despairing, to guide the lost, to resettle the dispossessed, to show hospitality to the stranger. Abraham entertained angels but we do not even know who our neighbors are! We do not even see the homeless. The pains and trials of those “not of our class” or “not of our race” are “not our problem”! . . . .Life itself is progressively cheapened. People who cannot defend themselves -the unborn, the severely disabled- are treated as things to be managed (or disposed of) by others. In our greed for personal wealth and power, we trash the environment, God’s glorious creation and the web of life that He designed to sustain us all, as if it were merely our property over which we have a right to do as we please. . . .

An excerpt “God Must Be Weeping,” by Very Rev. Archimandrite Nektarios Serfes. For the entire spiritual writing, click on this website: http://www.serfes.org/spiritual/september2007.htm

“Blessed are they who mourn, for they shall be comforted.” The 100,000 or so who march each year in the frigid air and  grim, grey streets of Washington D.C. on the anniversary of the U.S. Supreme 1973 “Roe versus Wade” decision to legalize abortion with virtually no limits are largely ignored by the U.S. media outlets for their efforts. But God sees; He counts our every effort made, our every tear shed, according to His call to mourn our sins, personal and corporate, and to be peacemakers between our nation and all of it’s unborn children.

Orthodox Christian Pro-Life Ministries and writings

Orthodox Christians for Life http://oclife.org/

ZOE for Life! http://zoeforlifeonline.org/

In Communion: Pro-Life Resources http://incommunion.org/articles/essays/pro-life-resources-5

In Communion: “The Treehouse: Saving Lives One by One” http://incommunion.org/articles/previous-issues/issue-36/the-treehouse

Frederica Mathewes-Green: “Something No Woman Wants” & “The Judgement of the Next Generation:” http://www.frederica.com/writings/something-no-woman-wants.html & http://www.frederica.com/writings/the-judgement-of-the-next-generation.html

“Pray Constantly” (St. Paul’s first letter to the Thessalonians 5:17)

In Communion: “Becoming the Jesus Prayer” http://incommunion.org/?p=338

Holy Cross Antiochian Orthodox Church: Khouria’s Corner (scroll down to her book The Jesus Prayer: The Ancient Desert Prayer That Tunes the Heart to God:  http://www.holycrossonline.org/our_parish/khourias_corner/

The book’s publisher, Paraclete Press, on the book: http://www.paracletepress.com/the-jesus-prayer.html

A Prayer

. . . O Lord, grant me tears to shed for myself,
and for the whole universe,
that the nations may know Thee and live eternally with Thee.
O Lord, vouchsafe us the gift of Thy humble Holy Spirit,
that we may apprehend Thy glory.

– St. Silouan of Mt. Athos

from http://silouanthompson.net/2008/03/saint-silouan-the-athonite/

https://armsopenwide.wordpress.com

health care for the disabled?

Here’s a post from Not Dead Yet from November, entitled Health Care: “People Like Me” – Ben Mattlin Reflects On Being Disabled and the Health Care Debate: http://notdeadyetnewscommentary.blogspot.com/2009/12/health-care-people-like-me-ben-mattlin.html

Note: Ben Mattlin also has a blog of his own. http://benmattlin.blogspot.com/ 

Without a doubt we need changes in our health care system in the U.S. But it would be prudent to consider what changes are in the works. In the video below, a congresswoman from Minnesota quotes some of our current Administration’s advisors. And their words, if they are not taken out of context, should be of great concern to people with disability and their friends: Obama Health Care Adviser: “Doctors Take the Hippocratic Oath Too Seriously” http://www.youtube.com/watch?v=GmX-Do9dCkc&feature=related#watch-main-area

Admittedly, this is the only thing I’ve seen and heard from this congresswoman; and there is some question as to whether some of the most outrageous quotes (“medical care should be reserved for the non-disabled”) were taken out of context. Apparently, Ezekiel Emanuel, one of the President’s chief health care advisors, wrote this in a scholarly paper describing the views of communitarians- not necessarily his own view. 

Here is an article co-authored by Ezekiel Emanuel, along with Govind Persad and Alan Werthheimer, entitled Principles for Allocation of Scarce Medical Interventions: http://www.docstoc.com/docs/17645393/Principles-for-allocation-of-scar [Lancet 2009; 373: 423-31 Department of Biothics, The Clinical Center, National Institutes of Health, Bethesda, MD USA (G Persad BS, A wetheimer PhD, E J Emanuel MD)]

This a carefully nuanced article, providing a number of ethical options, declaring each one in itself inadequate, and calling, in the end,  for a “coherent multi-principled framework.” To get a feel for its drift, one probably should read it a few times.  

The issue here is health care rationing, which would effect disproportionately people with disabilities.

Here’s a video, more recent,  from a more liberal source on health care rationing in the health care bill (there is some raw language in this one) It Turns Out There is Rationing in the Health Care Bill: http://www.youtube.com/watch?v=wn5xG1DDHwQ&feature=PlayList&p=B69BD7F16523ABA2&index=4

We spend our resources on what we value. If we take the words of Jesus concerning the least of these in St. Matthew 25 seriously, we, as a people, will investigate thoroughly all the stories out there about the denial of treatments, therapies, and medicines to individuals and certain groups of individuals, (such as “the least of these“ according to human estimations) and correct inhumane practices, making the changes that are needed, as a people.

Love hopes all things. (1 Corinthians 13) But the U.S.A. is not the Kingdom of God. May God grant that St. Matthew 25:31-46 would become our society’s bottom line, rather than the Gross National Product. We’re not put here to pile up stuff, but to take care of one another. I am not wise enough to proscribe how. If our “collective heart” was right, we wouldn’t need a government solution. But can we fix our “collective heart”* politically, coming up with wise boundaries in these matters, our leaders acting free of political and financial self-interest? This is the vehicle for societal change that is in place.

*(The subjects under scrutiny in St. Matthew 25:31-46 are not individuals, but nations, at least according to a literal reading of Jesus’ words. And so the matter of our “collective heart” is not without import.)

Even as love hopes all things, we also know, from St. John’s 1st epistle, that the whole world is in the power of the evil one. But the good news is that he has been defeated. “Thanks be to God, for He has given us the victory through our Lord Jesus Christ.” (1 Corinthians 15)

Whether or not Matthew 25 is our society’s bottom line, it remains eternally our Orthodox Christian bottom line.

And so we pray, (to our God, the ultimate source of meaningful change) and do what we can, according to our perception of His will, in His strength.

SCOBA: Disability and Communion

The Standing Conference of Orthodox Bishops in America (SCOBA) issued a statement on June 25, 2009 on Disability and Communion.

Very well done. It is a word from my Leaders, the Shepherds of the flock of true worship. It is the WORD to my word.

So let’s obey our leaders, and implement its mandates in our parishes. And since there is no copyright on the page of the statement, and their apostolic words go forth to the ends of the world, here it is reproduced  in its entirety from this web page: http://www.scoba.us/articles/disability-communion.html

Disability and Communion

Thursday, June 25, 2009

Embracing People with Disabilities within the Church

To all of the faithful clergy and laity
of the Holy Orthodox Church throughout the Americas,

Beloved Brothers and Sisters in Christ,

1. Understanding Disability, Embracing Persons with Disability

Persons with disabilities comprise the largest minority group in the United States, with almost 20% of the population facing disability in one form or another. Disability affects people of all backgrounds, nations and races, of both genders and any age. A disability stems from an impairment that is either congenital, or the result of disease, injury, or the developmental and aging processes.

Disability is a daily and, in many ways, a natural occurrence. We are all touched by disability in the form of illness or injury or difficulty at some point in our lives. Since we all hold the treasure of God’s life in fragile earthen vessels (see 2 Cor. 4:7), each of us is vulnerable to disability, whether by circumstance, by genes, by disease, by accident, or by age. Such disability might include chronic disease, vision or hearing impairment. However, for some people, such a physical, mental, sensory or emotional impairment substantially limits their daily activities.

Yet a person with a disability is not necessarily handicapped except through physical and attitudinal barriers created by others. Handicaps are in fact the barriers that we create for people with disabilities by excluding them socially and physically. There are many persons with disabilities even in our own parishes; nevertheless, our parishes have not reached out sufficiently to adults and children with disabilities in its ministry. Indeed, the reality of disability is often shrouded in silence or shame because the presence of disability challenges basic assumptions and stereotypes. Therefore, it would be useful for us to recall the fundamental theological principles that should guide our pastoral ministry and practical response as we realize our mission as Church to be a welcoming communion. “God shows no partiality.” (Gal. 2.6) “For the Lord does not see as we see; we see the outward appearance, but the Lord looks at the heart.” (1 Sam. 16.7)

2. Humanity in the Image of the Trinitarian God

One of the most repeated phrases in our liturgy is the Trinitarian nature of our God: “Father, Son, and Holy Spirit.” The God we worship is characterized and defined by communion or interdependence, not exclusion or independence. In our pursuit, then of a model response to disability concerns, we affirm a God of love and hospitality, in the manner of Abraham and Sarah welcoming the three angels (Gen. 18) reflecting the unity of the Trinitarian God. In this respect, the Church, too, is called to become the image of the Trinity, a unity of persons in communion, a place where everyone is welcomed.

Humanity – created in the image and likeness of God (Gen. 1.26) and comprising an icon of Trinitarian communion – is enriched and defined by the unique gifts and differences of every person. No one is created perfect, and all of us strive toward perfection in the crucified Jesus Christ, who alone is the perfect “reflection of God’s glory and the exact imprint of God’s very being” (Heb. 1.3) and the complete image of man – fully divine and fully human. Therefore, it is only in the Body of Christ, as a corporate image, that each person becomes an equal and indispensable member. Every member, those with as well as those without disabilities, bring specific and special talents to the Church. At the same time, we need one another in order for our gifts to be revealed.

Thus, in the Church, we learn to honor and to complement one another. However, such completion or perfection (theosis) is always a constant striving, never fully accomplished in this life. For, “just as the body is one and has many members … so it is with Christ.” (1 Cor. 12.12) Indeed, “the parts of the body which seem to be weaker are indispensable.” (1 Cor. 12.22) There are two points that we should notice in St. Paul’s words: first, that certain parts may “seem” weaker, but in fact are not actually weaker; second, that weakness is not the characteristic of an individual but of the entire Church. This means that, when people with disabilities are in any way excluded from our parish life, then the entire body is incomplete. “We all bear one another’s burdens in order to fulfill the law of Christ.” (Gal. 6.2) When St. Paul speaks of the weak, he is continuing a long biblical tradition that God chooses the vulnerable for the sake of bringing wholeness and healing to the entire community.

We often forget that the application of the word “membership” to persons is of profoundly Christian origin, and it is only in the Church that it assumes full and authentic meaning. St. Paul implies that members of the Church resemble organs of a body, essentially different from and yet essentially complementary to one another. Membership differs from mere inclusion in the collective or political sense. We are not a full community without one another. If we exclude or overlook one member, then we do not simply reduce the community; in fact, we inflict injury on the very structure of the Church.

3. Christ as Healer and Savior

Ultimately, the way that we embrace people with disabilities reflects the way that we perceive the incarnate and crucified Word of God. As Christians, the God we worship is characterized and defined by assuming flesh and lying utterly powerless on the Cross. Christ came to “reconcile and tear down the middle wall of separation.” (Eph. 2.14) As disciples of Christ, we are called to consider society’s walls, as well as the walls which we set up and which separate us from our neighbor. For these all too human walls contradict the ministry of Christ, which is a ministry of reconciliation and healing. It is unfortunate that, in our day, people with disabilities still encounter such walls, whether through physical barriers or through prejudicial attitudes; indeed, it is unconscionable that our parishes often tolerate or perhaps even contribute to such exclusionary conditions.

The healing miracles of Jesus, which are recounted in the Gospels, are primarily concerned with the reconciliation of persons to their communities, rather than merely the cure of physiological conditions. Jesus did not distinguish between physical healing, social restoration and the forgiveness of sins. For example, the man with leprosy is offered the opportunity to return to his community (see Mark 1.40-45), while the paralytic is forgiven his sins (see Mark 2.1-12). Forgiveness of sins implies removing the stigma imposed by the prevailing culture, where disability was associated with sin. Thus, disability is principally a social issue, while healing is the removal of social barriers.

We often reduce the significance and scope of forgiveness to guilt and redemption. Yet, the Greek word for forgiveness (synchoresis) implies much more than this, pointing to a sense of sharing and fitting together within community. Furthermore, all of us require such forgiveness and reconciliation within the community. Perhaps this broader interpretation of forgiveness will help us disassociate disability from sin, guilt and physical healing. What is called for is a sense of solidarity with all members of the Church, rather than an expectation of similarity with worldly images and stereotypes, whereby people emphasize either cure or acceptance of a condition.

4. Pastoral Ministry: Practical Implications

The Church’s role is to embrace the reality of humanity in all of its depth and breadth, including the reality of people with disabilities who are often excluded, rejected, or abandoned. For, “truly, anything that we do for one of my brothers and sisters, however, insignificant, we do it for Him.” (Mt. 25.40) The integration of persons with disabilities within the Church gives testimony to God’s love as expressed by His disciples and is a model for society where disabled people suffer from humiliation and marginalization.

Beyond the experience of marginalization, most disabled people are also economically disenfranchised, experiencing some form of deprivation in living and employment conditions. Moreover, their care-givers make considerable sacrifices, often unnoticed, experiencing manifold demands on their time and resources. In addition, disability can cause social discrimination, whereby people with disabilities experience loneliness and isolation. Bearing one another’s burdens” (Gal. 6.2) implies, first, noticing the suffering of others and then discerning ways of responding appropriately. Supporting people with disabilities involves removing emotional barriers, refusing to consider disability in a patronizing manner either as a test from God or the target of our pity. When our Lord was asked about the man born with blindness, He responded that “neither he nor his family sinned …” (John 9.3) Each of us is born into the world, with the gifts as well as with the weaknesses that we have, “in order that God’s works might be revealed in us.”

Therefore, welcoming every baptized Orthodox Christian to full parish membership makes the community whole and enriches all of us as God desires. Indeed, embracing persons with disabilities is a proclamation of the Gospel message. For, we are all called to “welcome one another, even as Christ has welcomed us.” (Rom. 15.7) All of us, with and without disability, are invited by God to a full life of faith and ministry, including worship, leadership, education, and service.

The most evident expression of the community is the common worship of the congregation. Orthodox worship is rich in color, sound, smell and movement, appealing to all senses and all persons. Therefore, we should examine especially carefully, then, whether we consider ways in which people with disabilities are encouraged to participate in our services, in our choirs, or in the many non-verbal elements of our worship. More fundamentally, we should examine whether the entrances to our buildings and the pathway to receiving Holy Communion are accessible to all members of the Church. Moreover, we should examine whether our liturgical and pastoral services are welcoming to those among us with challenges in movement, hearing, sight, or speech.

Furthermore, to feel truly welcome in our parishes, persons with disabilities must not be excluded from leadership roles. We should explore ways of involving people with disabilities in administration by inviting them to serve on committees, by offering assistance in transportation, or perhaps even by changing the venue of a particular meeting. We should consider every appropriate opportunity and dignified manner with which to include every member of the community in liturgical occasions and catechetical classes.

No one should be excluded from the manifold aspects of the church’s education (whether children, adults, or the elderly) or the community’s pastoral ministry (such as visitations and fellowship). There should also be provision in our seminaries for training and informing future clergy regarding aspects of inclusion for people with disabilities. Responding to issues of disability reflects the willingness to respond to the vulnerability of life itself. An inclusive paradigm of ministry is a crucial step in dispelling misconceptions and assumptions regarding disability, while rendering all areas of parish life accessible and possible to persons with disabilities.

5. Beyond Inclusion to Communion

The Americans with Disabilities Act (ADA), signed into law in 1990, was the first comprehensive civil rights legislation to protect people with disabilities. Yet, beyond legal obligation and civil conduct, responding to and including people with disabilities are not options for us as Orthodox Christians. This includes, for example, providing curb cuts, adequate ramps, sufficient handicapped parking, wide doors and aisles to accommodate wheelchairs. It is our personal and collective obligation to strive for the transfiguration of all people and all things in the heavenly vision of unity.

Humbly learning the proper language and appropriate behavior is part and parcel of our vocation as children of the living God and disciples of the risen Lord. It involves identifying and increasing the visibility of people with disabilities – those using canes, walkers, wheelchairs or service dogs. The key in relating to people with disabilities is always communion and openness, not mere compassion or pity. The only rules are sincere love and genuine respect. We are called to look at the person and to remember that the disability is only a part of the whole person. Thus, the first and most valuable gift that any community can offer a person with disability is recognition, rather than rejection. Our mission is, in humble cooperation with the Holy Spirit, to render the Church as a whole body, a human reflection of Trinitarian communion, an earthly image of the heavenly kingdom.

Let it be so among us.

St. Basil the Great’s New City

 

St. Basil the Great

St. Basil the Great, one of the Three Holy Hierarchs, in his explication of the gospel reading concerning the rich young ruler, challenges us to make a way that all may live and thrive, rich and poor together:

Building The New City: St. Basil’s Social Vision, by Fr. Paul Schroeder 

And where is this new city? Let us seek, that we may find. There are ministries here and there which reveal this new city, this manifestation of the Kingdom of God. Even in the U.S.A., where the situation of multiple jurisdictions complicates united effort, a beginning has been made. And we pray for the day when this new city will shine throughout our land.

And for ordering Fr. Paul’s  new book from St. Vladimir’s Press, which elaborates on St. Basil’s vision, go here: St. Vladimir Seminary Press: On Social Justice – St. Basil the Great

Another of the Cappadocian Fathers, St. Gregory the Theologian wrote a homily entitled “On Love of the Poor,” based on his encounter with St. Basil’s city of prayer and charity. A Catholic Worker House in Nashville, TN, with the same goals, shares a prayer based on excerpts from St. Gregory’s homily which expresses their yearning to live this way: Amos House Community: The Gregory of Nazianzus Prayer

Also, if you would click on the RESOURCES page above and follow the links to Orthodox Christian Ministries, you would find many efforts to create this new city: the ministries of Focus North America, the Matthew 25 House, the Monastery of St. Martyr Grand Princess Elizabeth, Al-Kafaat, the Oasis of Joy,Panagia Philanthropini, the Pokrov Community, St. Gregory’s Foundation, St. Matthew House, Trinity Youth Services, Joy of the Disconsolate, Raphael House, Russian Orphans Opportunity Fund, St. Brigid Fellowship, St. John the Compassionate Mission, St. Mary of Egypt Monastery, Hellenos House, and so on. A good place to start would be

http://www.focusnorthamerica.org/

But as one who has spent many years working with developmentally disabled adults with http://www.friendshipcommunity.net/ I would also love to see more local Orthodox Ministries with this focus.  Such as . . .

See SAE – Blessing Ceremony for Hellenos House by Archbishop Demetrios / World Council of Hellenes Abroad

[The original version of this post contained some reflections on L’Arche and Faith and Light, worldwide ministries to persons with developmental disability, begun by the Roman Catholic Christian Jean Vanier, both of which include non-Roman Catholic Christians. I mused on the matter of Orthodox Christian interraction with these ministries, which does in fact happen, and to what extent we could extend cooperation with them. (http://www.larche.org/ & http://www.foietlumiere.org/site/english/ )

In the months and years leading up to my discovery of the Orthodox Church, while working in a Protestant Christian group home system –Friendship Community, a residential provider for persons with developmental disability, in which my wife and I still work- the writings of Jean Vanier strengthened my sense of mission for our life with our friends in this community. And the desire to explore this matter from an Orthodox Christian perspective (appropriating Vanier’s vision and implementing it with other Orthodox Christians) remains.

But I am not qualified to proceed on this matter and my speculations in regard to it remain speculations until I confer with other Orthodox Christians, including bishops, as to the Orthodox Christian parameters of ministry with ecumenical partners. I will explore the matter further, and then post on it.]

 Troparion in honor of St. Basil the Great:

Your proclamation has gone out into all the earth Which was divinely taught by hearing your voice Expounding the nature of creatures, Ennobling the manners of men. O holy father of a royal priesthood, Entreat Christ God that our souls may be saved.

http://orthodoxwiki.org/Basil_the_Great