Thursday, September 28, 2006

Our journey is the same

Our journey is the same
Whether on foot or on wheels
Whether sight unseen or sound unheard
Whether we speak or not.

Above us is the same sky
Below the same earth
Around us the same greenery
We all know death as well as birth.

So travel with me, my friend
Join me on this road
Tell me a story, sing me a song
Sit awhile, take a load
Off your feet.

I'll bring a sack full of food
A staff to lean on
A book to read
A hat to calm the sun's rays.

We will choose from east or west
And begin the day with a prayer
No matter the weather
We'll get there.

On suffering - and being a believer

"In meeting suffering humanity, believers know that they are meeting Christ himself, whose Holy Face is the face of those who bear the endless crosses imposed on them by injustice, violence and selfishness."
Pope John Paul II

There is a mystery to suffering, one that can frighten us if we let it.

In fact some people run away from those who are suffering. They avoid them - intentionally or unintentionally. They may say they don't want to get involved, or rationalize their behavior in other ways.

But the bottom line is - they're scared. Or perhaps they're choosing to be selfish.

Why be afraid? Our faith tells us that suffering is part of life and, in fact, Christ took on suffering in human form to obtain our redemption. It is part of the faith life we have.

Selfishness, although common, is also inexplicable, considering how vulnerable we are as humans. Do we feel so immune from bad things happening to us, that we think it's okay to ignore those in need? What if we were the one who needed the help?

Maybe we don't think of it in those terms, but when we turn our backs on each other, we are making serious choices that affect others who need us.

Day after day I talk to people who are newly disabled who say the same thing: "I never thought it would happen to me."

Sadly, in my experience, it is not the disability itself which will cause them the most sorrow, but the way they are treated by some people. Most will adjust to the change in their body, but it is a far crueler thing to be treated as "less than". Being stared at will freak them out at first. They will be in shock when they realize that the invitations to social events stop from certain friends. They will hurt when they need help and other people are too busy.

And then there will be the joy that comes when others step up to the plate and act in a loving way. This will wash like water over the wounds, healing the sorrow . The newly disabled will learn to find their own joy in helping others again. For some, like myself, this will only be possible if others unselfishly help them with daily tasks. I pray that they find that help.

Hopefully, these newly disabled folks will learn to put human behavior in the right perspective- which is that we all are guilty of doing wrong at times and convict ourselves of that and learn from it. Such is the world in which Pope John Paul II wrote these words. He calls those of us who are believers to recognize that Christ's face is in those who carry crosses.

He calls on us to be there, whether we are disabled or not, for each other.

away from blogging....

I'm off to play wheelchair tennis this weekend so won't be blogging. Please feel free to leave comments - and I'll try to get a few more posts up before I leave.

Blindsided by Grace:Entering the World of Disability

check out this book by a paraplegic (who is also a Protestant pastor), who describes how his life changed after an accident resulted in disability

Cooperating with grace

Can you overcome your fear and doubt to cooperate with God's grace?

St. Juan Diego did. He was beatified in 2002 - a simple man who was baptized at the age of 50 and who worked the land, walking three to four miles to church every weekend. He saw an apparition on one of those long walks and eventually moved into a room off of the chapel, spreading the word to other Mexicans.

He is known as the Saint of Humility.

When he first told the bishop about his apparition, the bishop did not even believe him. What an unlikely candidate Juan Diego was - in the eyes of the world. But he listened to God's call and, through God's grace, did many good works.

Disability discrimination

Per yesterday's disability and work post, are you/have you experienced discrimination in your employment? Check this out!

Superstitions about blindness...

..from Planet of the Blind.

Right Now

God does not ask of us the perfection of tomorrow, nor even of tonight, but only of the present moment.
– St. Madeline Sophie Barat

When my nephews were younger, they would ask me to do things. Sometimes my answer would be that we'll do it later and inevitably their answer would be "No, I want to do it right now."

All of us can relate to not wanting to wait for what we want. We have all had times when we felt as if we had to have something right away. But it's a lot harder to learn to apply the same idea to living in the present and doing what matters "right now".

It might even seem like a matter of semantics. But it's clearly not when you try it out. The other day I had to make a choice at a moment during the day about how to handle a situation. I could choose reaching out to someone or putting it off. I was busy, I was tired and I was stressed at the time. I could think of many reasons not to take action at that moment.

I decided to reach out to the person right away anyhow. I discovered that there was a serious situation going on for her - and I was so glad I didn't wait. If I had, I would have missed an opportunity to be there for her.

I've learned that living in the future is really harmful to my future. I can always make choices about what to do and take action - right now. And if I ever doubt that such distinctions are not important, all I have to do is visualize my young nephews' faces!

Need some books on religion, disability and inclusion?

click above

Wednesday, September 27, 2006

ANNOUNCEMENT Disabilities Awareness Month Celebrated at Mass

The Catholic Community of St. Matthias

Cordially invites you to worship with us
As we celebrate

Disabilities Awareness Month

At St. Matthias Church
168 JFK Blvd, Somerset, NJ

On Sunday, October 15, 2006
At the 12:00 Mass

All are welcome!

Mass will be sign language interpreted

Assistive Listening Devices (ALD) are available

Church is accessible

Large Print is available

CART (Computer Assisted Real Time Captioning)
Will be provided

Reception will follow the Mass in the accessible
Parish Meeting Room

For further information or directions, please call
The Parish Office
At 732-828-1400

Quality of life for People with Disabilities

from Not Dead Yet -fact sheets link

Do you wonder how people with disabilities rate their quality of life? Click above.

Not Dead Yet

"Since 1983, many people with disabilities have opposed the assisted suicide and euthanasia movement. Though often described as compassionate, legalized medical killing is really about a deadly double standard for people with severe disabilities, including both conditions that are labeled terminal and those that are not."

- from the website of Not Dead Yet

Catholic forum discussion on Peter Singer..

..which mentions Wheelie Catholic.

That's fine by me. I stand in support of life for those with disabilities . Babies, old people - the whole nine yards.

Regarding arguments made in favor of ending the lives of those who have disabilities, I see folks judging those of us with disabilities with these lines of thought - having a lower quality of life, so it's kinder and more humane to end life being a hardship to parents/others, so it's kinder and more humane to end life not being worth considered human if the person doesn't meet certain criteria to justify their existence leading to...
..."is there a right to life if - x, y or z is 'wrong; with the person/baby..." -

It's an interesting discussion, all the more for the scientific response and rationalizations propounded in defense of killing disabled babies.

Prayer from others has comforted Cardinal George... he battles cancer.

Cardinal Sean writes on...

Prayer, Joy, Forgiveness, St. Padre Pio....a must read.

How the shortage of caregivers will affect upcoming baby boomers

Not to mention how it already affects those of us with disabilities today, week...

Disability and spiritual work

Life in Christ: Catechism #2427
Human work proceeds directly from persons created in the image of God and called to prolong the work of creation by subduing the earth, both with and for one another. ... Work honors the Creator's gifts and the talents received from him. It can also be redemptive. ... Work can be a means of sanctification and a way of animating earthly realities with the Spirit of Christ.

I spent some time in prayer over this passage this morning - hence the late posting. I was also catching up on some work.

I'm fortunate enough that I can work with my disability. Many people are not. There are barriers to employment and education that exist even though some people with disabilities want to and could work. (I am not discussing those who do not choose to work or cannot work because of their disability, but those who want to and are prevented from doing so.)

It can be difficult when a barrier exists not to give up hope of obtaining gainful employment. Sometimes it feels as though we are being undervalued, underpaid and overlooked.

So what can we do when that happens? I can tell you right now, that the best antidote might be to create your own job. If necessary, volunteer, do what you can to pick something that has meaning to you. It may lead to a job - or not. But it is still work - in the spiritual sense. Try not to be disheartened if you earn less - or nothing- if you work in the service of others because the spiritual work any of us do is worth more than temporal work.

Having said that, I despise the fact that we are still struggling to take our place in the workforce with equal pay, free of discrimination in all the forms that takes, access to services which we need to work productively and access to equipment.

So let's work toward a future where those of us with disabilities take our equal place in society in the work force.

In the meantime, let us not neglect our spiritual work here or waste our time and talents. There's much to be done.

Tuesday, September 26, 2006

About forgiveness

A blogger writes about his childhood experiences of growing up around a Down syndrome child and his brother - and what lessons in forgiveness and maturity he and his friends all learned.

The Ironic Catholic: Your Most Ironic Moment As A Catholic contest

The Ironic Catholic: Your Most Ironic Moment As A Catholic contest

Why not go over and join in?

No Nursing Homes on Wheels

You may be scanning posts on my blog and wondering what the information about community living for those with disabilities is about.

Basically there are people with disabilities who are being housed in institutions, such as nursing homes, against their will. Disability rights advocates, including groups like ADAPT, are working hard to change this situation with new laws and advocacy efforts.

The US Catholic Bishops have agreed to support new legislation entitled MiCASSA, the Medicaid Community Attendant Services and Supports Act, recently renamed the "Community Choice Act". This bill would let Medicaid recipients use their long-term care funds to live at home and avoid institutional treatment.

Our Church has always supported the sacred worth of every human being. If you scroll down you will see more posts about testimony given by disabled people who have been institutionalized .

This article "No Nursing Homes on Wheels" from 2002 explains the history and background- click above to read.

Catholic Carnival is up!

New Link: Disability Radio Worldwide

For a link to radio programs about those with disabilities, click above. Radio broadcasts are available on FM , shortwave radio or online.

The Gimp Parade: Feminine products denied to disabled women in nursing homes and other institutions; Forced medication to minimize menstruation

The Gimp Parade

Women in nursing homes are being denied access to pads and tampons, not allowed to leave to buy them, and some staff are forcibly suppressing the periodsof women through medications and other methods.

The Gimp Parade: "Is your life hard or super-hard?"

The Gimp Parade: "Is your life hard or super-hard?"

On a lighter note....random acts of kindness rewarded.. Boston, on the transit sytem today, riders who do acts of courtesy will be rewarded with a $2 book of coupons for donuts and coffee.

Census data for Americans with disabilities reports the following statistics after 16 years of the American with Disabilities Act:

51.2 million
18 percent of the population - have some level of disability

32.5 million
-people with a severe disability. They represent 12 percent of the population.

Percentage of children ages 6 to 14 who have a disability - 4 million children.

2.7 million
-people age 15 and older who use a wheelchair.

9.1 million use an ambulatory aid such as a cane, crutches or walker.

Specific Disabilities
1.8 million
-people age 15 and older who report being unable to see.

1 million
-people age 15 and older who report being unable to hear.

2.6 million
-people age 15 and older who have some difficulty having their speech understood by others. Of this number, 610,000 were unable to have their speech understood at all.

14.3 million
-people with limitations in cognitive functioning or a mental or emotional illness that interferes with their daily activities.

-of people ages 21 to 64 having some type of disability and also employed in the last year. The rate ranged from 82 percent of those with a nonsevere disability to 43 percent with a severe disability. For those without a disability, the rate is 88 percent.

Percentage of people with a nonsevere disability who work full time, year-round. This compares to 53 percent without a disability and 13 percent with a severe disability.

The poverty rate for people ages 25 to 64 with a nonsevere disability. This compares to 26 percent for those with a severe disability and 8 percent of those without a disability.

Don't Ask, Tell or Respond: Silent Acceptance of Disability Hate Crimes

...transcript of a speech by Mark Sherry on the underreporting of hate crimes against those with disabilities. The figures reported do not include, for example, crimes reported where data is not taken as to whether a person is disabled or not; do not include crimes which are called abuse /neglect because they are committed against the person with a disability; do not take into account the ability of the person to report the crime, whatever circumstances might limit that including institutionalization; do not take into account under reporting due to fear, dependence or other factors.

Interesting to note the low numbers in light of the number of news stories that hit the papers regarding incidents of folks in wheelchairs being seriously assaulted and sometimes, sadly, killed on our streets. Also interesting considering the testimony of folks in institutions who report assaults and other crimes - however these are clearly designated into the category of abuse/neglect instead. takes the position that new legislation is needed and reports:

"Enactment of the Hate Crimes Prevention Act (HCPA) has remained unfinished federal legislative business. The HCPA would expand the federal criminal hate crimes statute by removing unnecessary obstacles to federal prosecution of hate crimes based on race, religion, and national origin and providing authority, for the first time, for federal prosecution of certain hate crimes based on sexual origin, disability, and gender. Current federal law (18 U.S.C. Sec. 245) leaves federal prosecutors powerless to intervene in bias-motivated crimes unless they can establish the victim's involvement in a Federally-protected activity -- such as voting or going to school. Moreover, federal authorities cannot investigate or prosecute crimes involving death or serious bodily injury based on sexual orientation, gender, or disability-based bias when local law enforcement is unavailable or unwilling to proceed. "

Currently, only 29 states and the District of Columbia include coverage for disability-based crimes.

"Morality cannot be legislated but behavior can be regulated. Judicial decrees may not change the heart, but they can restrain the heartless. "
Martin Luther King, Jr.

Monday, September 25, 2006

High schooler born without legs plays football and...

..and wrestling...and read above.

That must have been a heck of a fire drill

Image: Wheelchair Accessible Kitchen

As a wheelchair user, I know the difference that accessibility makes in one's life. When items are at the correct height, you can do things from your wheelchair - simply put, you can be productive when you have the right tools.

Today much more is available to help increase accessibility. We have better technology, better design and more ideas than ever on how to improve quality of life for those of us in chairs.

My wheelchair - a thing of beauty

My kitchen ceiling is missing - partially. Due to leaks from the plumbing upstairs, the ceiling was stained and a contractor came to replace it. However, while he was doing the work he discovered more leaks. So he couldn't put the ceiling back up.
I never realized how much was hidden under that ceiling - wooden beams, pipes, insulation - until I lived with the innards of the house exposed for several days.

At first I thought it was really ugly. Some friends came over and pointed at the exposed plumbing and beams asking "When is that going to be fixed?" The first few days I was almost apologetic, saying it would be fixed soon. But in the last few days, I've begun to say to people that it reminds me of living in a rustic cabin in the woods - a cabin you just never quite finished working on. Barebones.

And I realize that it's never going to be "fixed" because the pipes and beams are not going away - they're just covered by the ceiling. Whether they're aesthetically pleasing to look at or not, they need to be there.

I realized that this is the same process I went through while adjusting to using a wheelchair. At first I thought all wheelchairs were ugly. I was very unhappy and scared about having to use a wheelchair and being "stuck" in one. Then I found freedom through the mobility it offered and my wheelchair started looking pretty good to me. I started adding accessories to it to make it even more useful - and personalized it. The day I was eager to add a net underneath it because all of my other female wheelchair friends had one was the day I realized that was no different than wanting a pocketbook someone else had that I admired! And I realized that my initial feelings toward my wheelchair had changed.

My wheelchair had become a thing of beauty.

Sunday, September 24, 2006

Guest Post from CPcharlie

My parents were Catholic, but never took me to church with my brothers and sisters. I was born with CP. If you watch TV maybe you've seen Josh Blue. He has the same disability as me. I talk and walk different than other people. I felt my parents were ashamed of me when they left me home on Sundays.

I was a good student . When I got out of high school, I worked at a workshop but didn't like it so I took the bus and got a job selling newspapers and candy at a stand. The customers sometimes made fun of me but I ignored it. After awhile they didn't notice my differences as much and I liked working. When I got pneumonia three years ago, I lost my job there. I now work at a recreation center part time as a clerk. I like it but would like a more challenging job so I take some classes at college now.

I go to Mass every Sunday . I also volunteer at my parish. I was handing out bulletins at first and now I also help in the parish office two hours a week. Sometimes I just run errands. I figure that's a help. I like doing this because I meet other people at my church.

I think God wants all of us to be together at Mass and in church. I loved my parents but I think it was wrong to leave me home all those years. I am glad I can go to church now.

Films involving disabilities

I recently spoke with a person from online who asked me to find a link to films about folks with disabilities. This looks like a good one-

Those Notre Dame guys!

Did you see the game last night? The Notre Dame team pulled out an unlikely win after running behind most of the game -showing a spirit reminiscent of the movie Rudy. You go guys.

Saturday, September 23, 2006

Living with Childhood Disability

Great information to make things easier from the Center for Children with Special Needs.

It includes:

finding jobs for youths with disabilities

how the ADA applies to child care

care organizing tools

how families can find emotional support

fire and playground safety (and general safety) for kids with disabilities
(safety issue tips broken down for different disabilities)

help for parents to navigate the internet

USCCB join others in supporting bill for community living for those with disabiliities

Disability Studies, Temple U.: Some historical US Congressmen with disabilities

Disability Studies, Temple U.: Some historical US Congressmen with disabilities

The Gimp Parade: Saturday Slumgullion #12

The Gimp Parade: Saturday Slumgullion #12

Prayer Warriors Apply Here

“Do not fear what they fear; do not be frightened.”
1 Peter 3:14

Recently I've spoken with some folks who have different kinds of problems. Many of their problems are big - some are very hard to deal with.

It's normal to feel overwhelmed and feel as if there is nothing you can do. But there is something you can always do- pray.

It's okay to feel afraid, but remember that we are in God's hands. These aren't just words -I've been through alot in my life too. Things generally work out and those things that do not will become more manageable as God gives us the grace to manage.

Keep the faith no matter what.

If I can be of help, I will do that. You would be surprised if you reach out how many people might have ideas or solutions!

And be a prayer warrior whether you have a problem or not - pray for each other please.

Current Problems of our brothers and sisters in Christ who have emailed me:

They need medical equipment or their equipment is broken -almost solved! working on it -please pray
They are alone and isolated - solved for a few -prayers needed for this
They have financial problems -working on this prayers please
They are hungry - this, through prayer and effort has been solved!
They are suffering complications of their disabilities - prayers needed
They seek employment but are unsuccessful -prayers needed

Thank you.

Everyday intercessions - St. Padre Pio

For a list of intercessions from the St. Padre Pio website, click above.

Friday, September 22, 2006

Americans help Iraqi orphans with special needs

The Catholic Explorer has run an article about a deacon and his wife whose son serves in the US Navy. He asked his parents to help raise money for orphans in Iraq who have special needs and have been abandoned.

This article talks about their efforts to help the children. What a wonderful service they are performing.

Monastic Musings: Art & Pilgrimage - Fr. Jerome Tupa, OSB

Monastic Musings: Art & Pilgrimage - Fr. Jerome Tupa, OSB

Yet another interesting post from Sr. Edith. Enjoy!

A lesson in give and take -love in the community

School kids were asked to collect 1.5 million pennies in order to teach them the magnitude of those affected by the Holocaust. A janitor in their school stole their pennies in the midst of their project.

When word got out, the community responded so generously that they reached their goal in four days.

One of the students in the article (click above) stated that it was a lesson in give and take. Something bad happens and you're given something else back.

I've had this lesson in my life- in abundance! Due to my disability, I've lost things. Yet when I needed a ramp, a friend generously offered to build it for me. When my kitchen needed to be renovated, friends, some of whom were parishioners, donated their labor, time and money. When my tennis wheelchair wore out, people in the tennis community provided me with a new one.

I've also experienced this give and take in other ways. I need physical help to manage and, yet, through finding that it's been a bridge for me to learn many lessons about myself and others. I've learned about true friendship, about what it means to stick for the long haul rather than just a sprint, about gratitude and humility. I don't believe I would have learned as much about give and take any other way.

Mostly I've learned about love - the kind of love Christ showed on earth.

When we see things happen like generosity of spirit and in acts, our hearts and spirits are renewed. Yet we have the choice to live like this every day of our lives. Christ showed us how. It wasn't in the huge miracles, although I'm sure I would have liked to have been there to see them. It was in the daily acts of love given within community.

I have seen this type of love over and over again in my life . I have experienced so much of it since my accident that I often think I would not trade what happened for anything in the world.

Although I wouldn't encourage anyone to pray for bad things to happen, it is comforting and reassuring to know that when they do, those who practice God's love here on earth can heal the wounds.

Your information is where? ..caregiving issue....

Read this article called Taking Passwords to the Grave. It spoke of the increased use of computers by the elderly (and all of us) and how after someone dies, relatives or friends cannot get at valuable information since passwords will not be given out - even after the person is deceased.

Think about it - how would this affect your loved ones or caregivers? Do you need to make a hard copy version of your online information for them in case you get sick or are unavailable?

Thursday, September 21, 2006

What's a quadriplegic?

A quadriplegic is a person with a spinal cord injury that affects all four limbs, whereas a paraplegic has an injury that affects the lower limbs. That's an in a nutshell description. Basically spinal cord injuries vary a great deal because the spinal cord is long and injury can occur at any point on it. Injuries at the cervical level usually results in quadriplegia .

Spinal cord injuries may affect trunk control, bladder function, respiratory function and heat/temperature control, among other things. They may result in loss of sensation or function - or both. Injuries can also be complete or incomplete which causes variations.

Confused yet? Well, there are alot of variations from person to person as you can see.

So here's a link to spinal cord 101 with more specific information.

Questions? Ask them.

I've decided that one way to tell people about my experience of being disabled is to write on here about questions I'm asked by folks. Maybe doing this will help people to understand those with disabilities better.


Last night one of the members of the bible group at my parish helped me out to my car. As we removed one of the wheels from my wheelchair to put it in my car, he asked me if I ever worried if the wheels would come off. I told him that no, when I first went into the wheelchair I worried about that alot, but it never happened.

It was a really good question.

Here's the long(er) answer:

I've used a wheelchair for over a decade. I haven't thought about a wheel coming off for many years. But his question brought me back to a time when all of this "disability stuff" was new to me.

I remember how frightened I was of the medical equipment- the wheelchair scared me a great deal. I was afraid of hills, afraid of going up and down curbcuts, afraid of falling out or tipping back. I couldn't navigate doors until someone taught me how to do it. And, yes , I was afraid my wheels would come right off because they were only attached by a lug nut device.

I was quite a mess until I met other people in wheelchairs who taught me how to use my wheelchair and reassured me that lug nuts do not ever come off, gravity sucks but can be conquered and other such wisdoms.

In a remarkably short time, with this type of support, I was speeding along in my wheelchair without much concern . My fears went away. I've been known to off-road, exceed speed limits and otherwise practice daredevil tricks since.


So if you have questions, post them . Ask me.


(as defined in the Catholic Encyclopedia)

-that this society aims at producing holiness in its members, and is possessed of means capable of securing that result, and
-that the lives of its members correspond, at least in some measure, with the purpose of the society, and display a real, not a merely nominal holiness.

Today Pope Benedict XVI addressed newly ordained bishops, emphasizing the importance of sanctity.

I have been pondering several things lately as a Catholic who is doing advocacy work for social justice. I feel as if I have one foot in two worlds at times: I am seeing issues with the eyes of those who are being oppressed as a minority, that is people with disabilities, and I am also trying to convey this worldview to society at large, a society which is unaware of many of the issues.

I spend most of my time spreading awareness and educating organizations and people on disability issues. Some of the time I am met with silence, other times I am told in a general way that society is not ready to deal with such things. Once in a while someone acknowledges that change is long overdue and he/she had no idea the issue existed.

At all times I remain as prayerful as I can. As a Catholic, I am aware that if my spiritual state is not positive, my efforts will not be either.

So I fear the trap of falling into nominal holiness. I fear that my life will not correspond with the purpose of the society.

I seek guidance with this. I pray, I speak to others who share my faith and I intend to stay close to my Catholic community. Last night I attended a bible study and we are covering Acts of the Apostles. It's a wonderful chance to take time out of my work day, as I am doing now as I write this, and indulge my need to feed and nurture my spiritual side.

If I fail to do that, my other efforts are to no avail.

So the following questions remain:

- how can I, as a Catholic, be more aware of the means available to me in our Church for producing holiness?
-how can I recognize when I've fallen into the trap of nominal holiness?

The Cross in Camouflage-- An Army Chaplain's Weblog

The Cross in Camouflage-- An Army Chaplain's Weblog

On Hand holding, Things Held, and Being Held, written by an Army chaplain in Iraq
“I have held many things in my hands, and I have lost them all; but whatever I have placed in God's hands, that I still possess”
Martin Luther

Wednesday, September 20, 2006

Disabled Catholics In Action

I just added a new link for this group ---- to the right. It's headed by Mary Jane Owens, who headed NCPOD for 13 years. One of the board members is Lucy Gwin, who is the fabulous person behind Mouth magazine. Check it out.

Report from National Hearing on Ending Institutional Bias

Click above to read testimony by people with disabilities who have lived in nursing homes.

One participant said that you don't live in a nursing home, you just exist there...and there are countless stories of mistreatment, being denied freedoms of any kind and the difference between living in the community with an aide as opposed to a nursing home.

NCPOD agrees to support Community Choice Act

On September 15, members of ADAPT met with the National Catholic Partnership on Disability, which agreed to support MiCASSA, the Medicaid Community Attendant Services and Supports Act, recently renamed the "Community Choice Act". This bill would let Medicaid recipients use their long-term care funds to live at home and avoid institutional treatment.

Email request - Special Olympics Link

I received a great email from a friend named Mike. He wanted to know why I never put up the Special Olympic website on my blog! He said he likes my blog, the pictures are cool BUT - no special olympics link!

OK, Mike, here you go- and you're right - mea culpa (that means I'm sorry in Latin).

By the way, Mike, now that I've read all about the Special Olympics and their website, I'm going to want to hear from you about what *you* do in sports there - so keep me posted!
G.K. Chesteron

"Christianity has not been tried and found wanting; it has been found difficult and not tried."

Nebraska rights group upset that initiative turned down...

..for failure to obtain required number of signatures. They claim the number of signatures required was changed when a higher standard for the number of signatures needed was applied based on incorrect information. Their initiative deals with protection in cases of euthanasia of the disabled.

GPS levels the playing field for the blind..

..helping them navigate more independently with a guide dog.

When I grow up, I want to be a disability advocate...

Use it or lose it - that's the mantra of physical therapy when dealing with function after recovery from a spinal cord injury for a quadriplegic . You have to push your body to do what it can and use that function to maximize what you have.

In order to do that, you have to accept the fact that you're going to be exercising the muscles you want to keep - every day. At first, this isn't easy. It seems like an uphill battle that you just can't win. As time goes by, however , you see the benefits of your efforts and it gets much easier to be disciplined about it.

I find this to be true of other things in my life too - like advocacy. I tire sometimes of trying to explain to people how civil rights are involved with issues concerning the disabled when they see what we're asking for as an unreasonable demand.

I've sat in on debates about what's fair on a cost-benefit basis to make facilities accessible. Some folks argue it's not cost effective to make things accessible if the disabled don't use them. Those of us with disabilities argue that if you make facilities accessible, the disabled will show up.

How can we prove that? Look around. There are more people with disabilities participating in American society than before the ADA passed. The numbers will increase.

I stand on the shoulders of those who struggled before me to get the ADA passed, who braved leading the charge. I'm sure they were told, too, that what they were asking for was unreasonable and not cost-effective.

It's not cost-effective, but a matter of civil rights. It's a matter of human dignity.

I cannot promise anyone that building a ramp, making a nature trail accessible, providing braille materials or teaching handicapped awareness will provide any economic benefit to their business or organization. So if we mete out access based on a cost-benefit analysis, progress is going to be mighty slow.

Isn't that why the USCCB's 1978 pastoral statement on welcoming the disabled includes this language:
"Each parish must examine its own situation to determine the feasibility of such alterations. Mere cost must never be the exclusive consideration, however, since the provisions of free access to religious functions for all interested people is a pastoral duty."

It goes on to state that if a parish cannot afford physical alterations, other accommodations can be made.

The Catholic church has gone above and beyond what is required by law in issuing this statement. The Church clearly sees the real issue: providing inclusion, not doing the cost-effective thing.

I really did not plan on growing up and being an advocate for the disabled. But I see it as a sign that I've grown up spiritually that I am willing to speak up for those who cannot speak.

When I'm treated as if I am unreasonable I take it as a sign that new ground is being broken.I understand that's part of the gig - but it's nice to know that the Church understands the true reason behind the struggle.

Monday, September 18, 2006

Just wanted to say thanks to all my readers!

Dank je wel
I ni ch

Ù rú èsé

Dua Netjer en etj
Imbuya mono
Thank you

WWJD? He would practice inclusion

If you see a disability as an inconvenience, anything is possible. If you see it as a handicap, it becomes a stumbling block.

My pastor was talking in his sermon about how the Apostles and Jesus must have felt dealing with the crowds of people, some of whom were disabled. He brought up the topic of inconvenience and how, as Christians, we need to extend ourselves beyond a comfortable, "feel good" point. Jesus did. He taught his Apostles to.

What would Jesus do? He would practice inclusion.

Yet, somehow, this never sunk into our society. For years we kept people with disabilities behind closed doors. We shut them out of society. We passed a law about 16 years ago called the American with Disabilities Act in our country which has helped improve access. Yet, globally, the UN is still working on a treaty for the rights of the disabled.

Why has it taken so long to get out of the gate with this? Why is it that when we speak up we are told to stay home? (See comment to prior post.) Or treated as if we have a sense of entitlement?

What is this resistance to change?

One part of it is that there is inconvenience involved. This inconvenience can be solved by planning ahead for the most part. It is a fact of life, every single day, for those of us who live with disabilities. We learn to accommodate situations to our disability and vice versa. You probably do the same thing with more minor disabilities - like wearing glasses or bringing along medication on a trip. It's just that we don't think of these minor disabilities the same way.

So if your next question is how can your congregation do that, please just ask us- either the person in your congregation who has the disability or email me. We will be able to tell you what it is we need - if anything.

Sometimes all we need is a handshake and a welcoming smile.

Are you Disambiguating?

Disambiguation is defined in Wikipedia as the process of resolving ambiguity.

I think it's a term we should apply to inclusion. After all, isn't alot of it about resolving ambiguous ideas, thoughts and concepts?

Think about it. A large part of the problem is that we the disabled haven't had accurate information put out there. The information floating out there apparently is sometimes downright wrong. Right there we need to practice disambiguation.

For example, we need to resolve any ambiguity about the fact that we like our wheelchairs kicked. We don't.

Today I informed a young man of about 12 in church that if he kept kicking my wheelchair I would go into spasms. He looked positively horrified - but he stopped.

I only resorted to saying this after his father already told him to stop kicking my wheelchair, I spasmed rather obviously about three times almost hurling me onto the floor and I realized he probably wasn't going to stop unless I said something. I was in a great deal of pain the first time he kicked the chair, even more the second time and by the third time I was getting ready to ask for divine intervention.

A friend pointed out that the kid stopped because he was probably surprised that I could speak. I think he was probably more concerned that "spasm" meant I would go into convulsions. He didn't seem to mind that he would kick the wheelchair and I would jiggle a bit.

What am I, a toy? Or is he just practicing for the junior high football team as a kicker?

What kind of message have we sent in society to our kids that it's okay to sit in church (or anywhere for that matter) and kick someone's wheelchair? I'll admit I had a moment or two of trying to resolve the ambiguity of having to even say anything when his parent was sitting right there. Yet the kid didn't listen to his father when his dad told him to stop kicking. And I was in so much pain that I was afraid I would greet the start of the "Alleluia" with a blood curdling scream so I didn't have much choice.

By the way, his father and I were fine by the time of the Sign of the Peace. The young kicker refused to show any sign of peace. That's okay. I can deal with that ambiguous response by disambiguating.

Don't kick wheelchairs.

Sunday, September 17, 2006

My story of the gifts of being a caregiver

Years before I became disabled, I was an aide to my friend Andy. She had polio and slept at night in an iron lung much like the one in this picture.

During the day, however, she used a power wheelchair and a portable respirator. I was her aide for a few years, a job I had while completing my education. Her parents hired me, asking me to please keep her safe. Because Andy was very adventurous. Despite her physical limitations, she went to Mardi Gras ( according to her friends she marched IN it) and had a ride on a motorcycle (which ended when she started to turn blue without her respirator) .

She was so light that I could easily lift her in and out of the iron lung, to her wheelchair, to the table I dressed her on. She grew to completely trust me. I knew how she liked things, from her night time snack to the way she liked her shoes done up. She was not fussy, but I paid attention because I wondered what it would be like to have to depend on someone for those things.

I never imagined that someday I would find out first hand.

I believe God puts people in our life who can teach us things. I know that Andy taught me many lessons that prepared me for dealing with my disability and others' disabilities.

She passed away shortly after I stopped helping her, succumbing to pneumonia in her early 20's.

I still miss her sense of humor and great perspective on life. I have met few people who were as honest with me or as loving. I don't think Andy ever said an unkind word to me, nor did she ever minimize other peoples' problems. When a friend lost a boyfriend, she went to Andy to cry on her small shoulder. When someone had money problems, Andy would go into her small tin of savings and pull out money and offer it, embarrassing the person into checking out the want ads immediately! If someone needed a place to stay, Andy would tell them the couch next to the iron lung was theirs - she got lonely being "locked up". It wasn't unusual to find a new (or old) friend sacked out on the couch when I went in to get her ready for bed at night on my way back from my other job as a musician.

In our circle of friends, Andy was always a part of things.

These are the gifts I received from being a caregiver - the lessons I learned:

Time is precious. Don't waste too much of it feeling sorry for yourself.
Never be embarrassed to ask for help you need. Never be embarrassed to give the help someone needs.
Be kind to each other because we all have vulnerabilities.
Never assume anything about anyone else - God has a sense of humor.
Keep things in perspective.
Remember that you have an innate dignity no matter what .
Friends don't leave friends alone in an iron lung - or in any bad situation. Be there for people even when it's hard.

Monastic Musings: Abundance

Monastic Musings: Abundance

A wonderful post , once again, from Monastic Musings

RIP Sr. Leonella Sgorbati

An Italian nun who trained nurses at the SOS Kindergarten Hospital in Somalia has been killed. She is from the Missionaries of the Consolation order based in Nepi near Rome.

She was shot outside the hospital going to her house across a gate.

Guest Post from Dirty Butter

Every now and then there is a comment left that I want to turn into a post! (If you leave a comment please check back as I will request your permission in a comment after yours before I put it up. Most likely your insight is wiser than you think. And I truly appreciate the participation of my readers.)

This one by Dirty Butter from Day by Day with Peripheral Neuropathy falls in that category. She writes from the perspective of someone who is dealing with physical limitations - who also does caregiving- and contains wisdom about the need for inclusion to make us all whole:

Dirty Butter writes;

My Daddy is well on his way to being 102 years old. Whenever he has trouble getting dressed or anything else frustrates him, he always says he wishes he would go on and die. And I always tell him there's a reason why he's still here.

My mother lingered for a long time with Alzheimer's, as we cared for her body long after her mind was gone. It would be way too easy to agree with Daddy that some people are of no use here and would be better off "somewhere else".

I can see in my own self the truth of why Daddy is still here and why Mama needed care for so long. I grew up during all these years of care giving. I had never been a spoiled only child, but I also had never had to deal with any unpleasantness. I had not been hardened in the fire, so to speak. Dealing with the old, the ill, the disabled, anyone with an impairment of any kind, has the potential to bring out the best in the rest of us. We learn compassion, empathy, helpfulness, courtesy, patience, and so many other positive character traits that good times and perfect health cannot teach.

What I'm trying to say, Ruth, is that you and others like you, are actually GOOD for the majority of us! If society isolates [people with disabilities], they deprive themselves, not just you.

[Click above to read Dirty Butter's blog]

Thank you so much for your comment. I have a great deal of respect for caregivers. We have an awesome caregiver group in our parish.

Let me just add, as I emphasize here on my blog, that people with disabilities, in the context of family, church and society have much to offer in terms of talents and skills (and expressions of God's love) which is overlooked and, unfortunately, lost when they are not included.

On the place of happiness in Catholic moral thought

Saturday, September 16, 2006

Spontaneous wheelchair racing

Whenever I run into my friend Sean at the local mall, I know I'm in for a wheelchair race. It's not anything we plan.

Sean has a turbo power wheelchair. I don't know what kind of engine this wheelchair has but he hits his joystick and off he shoots. He also has been in a wheelchair his whole life so he's expert at race strategy. He can figure out a way to weave in and out of the customers so that you're left somehow behind him, with a choice to run over a baby carriage or a grandma.

Today however I was not his victim. I had my nephew along in his wheelchair.

I tried to warn my nephew that Sean will just launch into a spontaneous race. And , you see, you just can't turn him down. I've never been able to. Neither was my nephew.

He kind of taunts you until you decide you're going to just race him down an aisle or two. What the heck.

But then he beats you - and so you keep racing. Before you know it, you're racing Sean all over the mall.

And you never ever never ever win.

Sean, my nephew and I got onto an elevator. That's when it began. Sean said "I bet I can beat you in this wheelchair."

My nephew said "No way."

"OK, we'll see," Sean said as the doors opened.

"Don't - do - it," I told my nephew. He gave me a look that said "Watch this." I knew he was a goner.

A few moments later, Sean had raced my nephew down the shirt aisle in JC Penneys and basically run him off the road, er, main aisle. My nephew was tangled up in some sweater vests I think.

"You okay?" I asked.

"Where is he?" my nephew asked. It was war. He took off after Sean.

Then I saw the two of them weaving in and out the upper level of the mall. I rolled behind, rolling my eyes.

But you know what I saw? People laughing, people grinning, people enjoying Sean and my nephew as they raced each other spontaneously. I saw it in a way that I can't see it when I'm busy trying to beat Sean.

It was great.

Sean won of course. My nephew gave up after about fifteen minutes. He told me that he'll try again.

Of course he will.

Having an attitude - of faith!

With faith,
All that is dark becomes light, and what is bitter becomes sweet.
Faith transforms ugliness into beauty, and malice into kindness.
Faith is the mother of tenderness, trust, and joy …

There is nothing faith cannot overcome;
It passes beyond all shadows and through the darkest clouds to reach the truth, which it embraces and can never be parted from.
Jean Pierre de Caussade (1675-1751), French priest

It isn't the circumstances a person finds himself in that define whether he will become angrier or kinder, hopeful or despairing. It is the degree of faith he has - or doesn't.

Faith colors our existence. When I see my friends struggle, when I see them rejoice, I know that their journeys are colored by their faith life. Being human, it can be hard to stay strong in our faith when things get hard. Those who have lost faith or don't have it struggle more with problems, in my opinion, because it is just harder for them to have hope. This causes more suffering than for someone who believes.

I was accused today of having an attitude - of faith. Someone said to me "You believe that God will take care of everything!"

For a moment, I didn't say anything. Then I laughed. "Of course God will take care of everything. I do the footwork, that's all."

"Do you really believe that?" he asked.

"I do. What do you believe?"

"I don't know," he replied.

So I guess I have a 'tude. It not only comes from my faith as a cradle Catholic but also from my experiences living that faith through good times and hard times. When I say I believe, I know. When I say it out loud, I'm happy to have it repeated back to me.

Why would I deny a 'tude of faith?

Can I explain it to everyone? No, I know not everyone will understand. I can try to live it and share about it with people who are open to that however. I'm not going to sit on this gift I have which I believe is given through God's grace. I didn't "earn" my faith. Which makes all of it an even more amazing gift.

What a great fortune it is to own faith! I can't lose it - unless I choose to . No one can take it away - unless I allow that to happen. Nor can it be diminished without my say-so.

I can choose to nurture my faith. I can practice it and grow it up. I can share it. I can take it everywhere with me.

So why would I not have a 'tude about this wonderful, amazing, universally applicable gift from God?

Statement from Vatican Information Office 9/15/06

"Concerning the reaction of Muslim leaders to certain passages of the Holy Father's address at the University of Regensburg, it should be noted that what the Holy Father has to heart - and which emerges from an attentive reading of the text - is a clear and radical rejection of the religious motivation for violence.

"It was certainly not the intention of the Holy Father to undertake a comprehensive study of the jihad and of Muslim ideas on the subject, still less to offend the sensibilities of Muslim faithful.

"Quite the contrary, what emerges clearly from the Holy Father's discourses is a warning, addressed to Western culture, to avoid 'the contempt for God and the cynicism that considers mockery of the sacred to be an exercise of freedom.' A just consideration of the religious dimension is, in fact, an essential premise for fruitful dialogue with the great cultures and religions of the world. And indeed, in concluding his address in Regensburg, Benedict XVI affirmed how 'the world's profoundly religious cultures see this exclusion of the divine from the universality of reason as an attack on their most profound convictions. A reason which is deaf to the divine and which relegates religion into the realm of subcultures is incapable of entering into the dialogue of cultures.'

"What is clear then, is the Holy Father's desire to cultivate an attitude of respect and dialogue towards other religions and cultures, including, of course, Islam."

Friday, September 15, 2006

Have mercy!

How happy I am to see myself imperfect and be in need of God's mercy.
St Therese of the Child Jesus and the Holy Face, OCD

Did you ever roughhouse with your siblings or friends when you were a kid until someone cried "Have mercy!" ? What a relief when they stopped! Yet the relief that follows after someone stops tickling you or holding you down is just an iota of what we can expect from God.

God's mercy is, like God, never ending. It is greater than we can even imagine. It is there whenever we need it and, of course, God knows when that is since He is everpresent.

But are you happy that you are imperfect? What about that hot temper you have? Or the tendency to rush all of the time? Are you happy that you don't look the way you want, that you have a learning disability, that you have asthma? Probably not! Our imperfections bother us. Because we are human, we don't like things that make us uncomfortable or even cause us to suffer. We want to be relieved and we cry out for mercy.

The paradox is that if we were not imperfect and fallible human beings, we would not need God's mercy. The vulnerability we have draws us nearer to God's mercy, which is one of His greatest gifts.

St. Therese found a sense of joy in this paradox. She embraced her imperfections, recognizing that God extended his mercy toward her because of them. She had faith that her needs would be met by His great mercy.

So the next time you feel like crying out for mercy, remember that God is there to meet your needs.

Inclusive Sacramental Preparation

“And the eye cannot say to the hand, ‘I don’t need you!” And the head cannot say to the feet, ‘I don’t need you!

On the contrary, those parts of the body that seem to be weaker are indispensable, and parts that are less honorable we treat with special honor.”

(1 Corinthians 12: verses 21-23)

click above for a great story written by a Mom about her daughter's preparation for Communion - and the gifts she had to bring!
If it were given to a man to see virtue's reward in the next world, he would occupy his intellect, memory and will in nothing but good works, careless of danger or fatigue.
– St. Catherine of Genoa

Temporary and Permanent?

For God so loved the world, that he gave his ONLY BEGOTTEN Son, that whosoever believeth in him should not perish, but have everlasting life. (John 3:16)

Last night, I spoke with someone grieving over being told that her disability would never go away.

"The doctors told me it's permanent," she said. "And I can stand the idea of it being temporary, but not permanent."

I understood how she felt. We go through an adjustment process when we acquire a disability. Some people get depressed. Others get angry. Or both.

I gave her time to talk about how she felt because I know she needed that. Then I asked her if it would be helpful to her if I told her how I came to terms with my disability. I explained it would take time, but that I had developed a perspective that helped on days when, early on, I had those same feelings.*

She said yes. So I told her what my realization was. " All disabilities are temporary. Because life on earth is temporary."

There was a silence. "Are you one of those God people?" she asked.

I laughed. "I'm a Catholic. I believe in God."

Another silence. "I do too. Hadn't thought of it that way." Then a sigh. "I guess someone can stand something if it's temporary."

I told her to try that, until knowing that it was "permanent" was not as scary.

Living with her disability over time will calm her down. Most people are just so frightened and the people around them unwittingly add to it. It has a ripple effect.

We are not here forever. Whether we want to admit it or not, we're mortal. So nothing is permanent.

*Over time, I adjusted to having a disability and , in my experience, many people live with disabilities without being in emotional pain over it - this is usually an initial reaction added to by society's fear of "being disabled". We do, however, get bummed by the lack of inclusion and access in society. There is a great cartoon with a picture of a wheelchair user at the bottom of a flight of steps looking up who says " Now I'm depressed."

Through the Looking Glass

Our mission is "To create, demonstrate and encourage non-pathological and empowering resources and model early intervention services for families with disability issues in parent or child which integrate expertise derived from personal disability experience and disability culture."

Their Parenting with a disability newsletter is now available online.

Thursday, September 14, 2006

USCCB Guidelines :...we acknowledge the dignity and positive contributions of our brothers and sisters with disabilities...

Our defense of life and rejection of the culture of death requires that we acknowledge the dignity and positive contributions of our brothers and sisters with disabilities. We unequivocally oppose negative attitudes toward disability which often lead to abortion, medical rationing, and euthanasia.

Pastoral Statement of US Catholic Bishops, Welcome & Justice for Persons with DIsabilities

The Gimp Parade: Congressional Oversight Committee on the ADA

The Gimp Parade: Congressional Oversight Committee on the ADA

Got inertia?

Once again I give you thanks for your merciful love, kndest Lord, for having found another way of arousing me from my inertia.
Saint Gertrude the Great

Today was a low energy day for me. It's not that I didn't get anything done - I just didn't seem to be able to get any enthusiasm going.

At first I started to work on the small tasks, thinking coffee would kick in. It didn't. Then I went on to other tasks anyhow, but I wasn't feeling my usual sense of enthusiasm.

It was a good day. That wasn't the problem. I just felt the burden of inertia in all that I did.

Then the Peapod man came. Peapod is a food delivery service and the drivers really do wear green hats. (In fact, I am a VIP- Very Important Peapod customer. I got the notice in the mail and when I asked the driver if he was going to sing me a song, he did not look enthused. Fine.)

Usually the arrival of vast quantities of food excites me, but even that left me in a state of intertia. When my aide asked what I wanted for dinner, I started to think about it - and never told her. So she left me food out anyhow. (Thank you. I didn't even realize I didn't ever answer.)

I know that's true inertia, when I have an entire refrigerator full of food and I can't even think of what I want to eat!

So by now I'm really disgusted with myself, thinking that I'll just have to get through the day and chalk it up to National Inertia Day 2006 - remember the date.

But then Something happened. I always know when things with capital letters happen. Those Things Are Not Subtle.

I took some time out to pray. I read a bible passage "My grace is sufficient for you, for power is made perfect in weakness." 2 Cor. 12:9. And I did indeed feel very weak for having this mind set of inertia. So I thought about just resting in God's grace. After all, I can draw strength that way.

So my inertia disappeared. I continued to plod along with my tasks and it's not even that I was any faster, but it was with an attitude of enthusiasm, not a sense of being in quicksand.

Got inertia? Pray!

being Catholic...

One must have the memories of youth to become a Catholic.
Franz Liszt

I thought this was appropos while I was reading about the Pope's visit back to his homeland and his journey to his old childhood memories.

Can you imagine going home - as the Pope? It must have been emotionally draining, yet also exciting.

I do think all of us who are Catholic tend to be very respectful of a sense of history and our own spiritual growth. Many of our spiritual practices are based on deep reflection, which requires a certain self discipline and certainly should help develop insight.

Yet, at the same time, there is a youthful exuberance about being a Catholic, an innocence that we bring with us every time we receive Communion as a child of God that may fit this quote a bit better.

The rituals we practice reinforce the sense of familiarity, yet at the same time each time we practice them our faith deepens.

Having me around...

...makes for a more whole society.

Isn't that great? I was reading Mouth magazine today and there was an article dealing with keeping people with disabilities in the community, rather than placing them in nursing homes or institutions.

Martinez de Pedro of New Mexico is an artist, an oil painter who is a Native American who was featured.

She is eloquent when she criticizes policies that rip "people from their community and institutionalize them" because it leaves the entire community dysfunctional,shattering the lives of others related to the disabled person. *

A quadriplegic at the C5-6 level, she was one of the early quads to have a baby. She feels that modeling a lifestyle outside of an institution has helped to change peoples' attitude toward disability.


I read about a retired Christian pastor who left his congregation after his disability put him in a wheelchair. He said that the congregation couldn't handle it. Some felt that his disability would have been healed if he was spiritually stronger and that he must have sinned. This attitude made it impossible for him to continue to lead the congregation and he left. He felt that people subscribed to a "theology of glory" meaning that " if you're right with God, then everything's right in your life, that you have health, wealth and prosperity."


Having me around makes for a more whole society.

So whose loss is it when inclusion doesn't work?


*Mouth magazine Issue 95-96 "There Is No Place Like Home"

Wednesday, September 13, 2006

Veteran advocate to head council for Personal Care Assistants

Paul Spooner will head a council to help ensure better quality care from PCA's in Taunton, Massachusetts. Spooner, who has had a neuromuscular disorder since the age of 8, has advocated for the disabled for over three decades.

Announcement: St Matthias' Annual Disabilities Mass

The Catholic Community of St. Matthias

Cordially invites you to worship with us
As we celebrate

Disabilities Awareness Month

At St. Matthias Church
168 JFK Blvd, Somerset, NJ

On Sunday, October 15, 2006
At the 12:00 Mass

All are welcome!

Mass will be sign language interpreted

Assistive Listening Devices (ALD) are available

Church is accessible

Large Print is available

CART (Computer Assisted Real Time Captioning)
Will be provided

Reception will follow the Mass in the accessible
Parish Meeting Room

For further information or directions, please call
The Parish Office
At 732-828-1400

Quality of Life for People with Disabilities

A wheelchair user in Tasmania with a mobility impairment wrote on the web that, until he was able to get a wheelchair, he had no life. Now that he has a wheelchair, he has a business and a family and can join in life like everyone else.

The young man in the photo is giving a wheelchair mobility skills clinic in Romania to teach others how to get around in wheelchairs.

Unlike other populations, people with disabilities can only advocate for themselves when they have what they need, whether it be equipment, personal assistance or technology.

This has been a huge barrier in making progress since the very people who need to tell society what they need cannot do so since they don't have what they need. This paradox makes members of the disabled community extremely vulnerable.

It has also contributed to the myth that there is either no quality of life or a low quality of life if you are disabled. The truth is that quality of life is not reported as greatly diminished by those with disabilities in most medical studies. This is true across the board, whether it is an acquired disability or one from birth.

So are dealing with a non-issue? No, that's not true either.

We still face enormous obstacles trying to get the proper resources for ourselves and others so we can have quality of life. For example, I need my wheelchair and my special computer in order to work. Without those pieces of equipment, I would be unable to be productive and my quality of life would suffer greatly. So, I might add, would Stephen Hawking's quality of life be nil without those same things.

So it is true that one can argue that I would have less quality of life if I did not have that equipment. But that's a different issue than saying that I would inherently have no quality of life because I am disabled.

I think that what confuses people in this quality of life discussion is that they try to define it according to able bodied standards. They take the lowest common denominator of a person confined to bed or without adequate care and then argue that it would be cruel to ask someone to live like that.

This argument does two things: it promotes stereotypes of what it is like to live with a disability and it also condones depriving people with disabilities from receiving the equipment or care they need to have a quality life.

To break out of these stereotypes we need to think outside the box. We need to remember that improvements in equipment and technology and care now allow people with disabilities to live in ways never dreamt of before. We need to set aside our assumptions that requiring care of any kind diminishes us or our quality of life. It is a different, but not inferior, way to live.

If we reframe our assumptions, we can move past the negative portrayals and images drawn by those who argue that those with disabilities have no quality of life and emerge on the other side with new paradigms for lives of dignity.

It is the lack of access to equipment and care, housing and employment, church and society, that results in a lower quality of life. It is not the disability.

Pope Benedict XVI: Address from March 2006 on disabled

The Pope spoke about the alarming trend toward euthanasia among medical ethicists, based on the quality of life arguments propounded. (click above for the Pope's full address).

Pope Benedict XVI : Faith and reason in debates

“The courage to engage the whole breadth of reason, and not the denial of its grandeur – this is the program with which a theology grounded in Biblical faith enters into the debates of our time...

A reason which is deaf to the divine and which relegates religion into the realm of subcultures is incapable of entering into the dialogue of cultures.”

His entire speech can be accessed by clicking above. The press has been focusing on his remarks regarding Islam.

Secular rationalism, the Pope urged, needs to be tempered by including theology in our debates.

St. Ivo - patron saint of advocates

St. Ivo was a lawyer who lived in the thirteen century. He lived an ascetic life as he advocated for the poor. After he retired, he spent a great deal of time building a hospital with his own funds and preaching at his church.

St. Ivo -guide us as we try to help those who are less fortunate. Give us discernment to know when patience is required. Help us to take the proper actions in the best interest of the greater good.

Peter Singer:Architect of the Culture of Death

Link to an article, named above, in the Catholic Education Resource Center. Specifically talks about his views on babies with Down Syndrome ::shudder:::

Note this line:
"At a Princeton forum Professor Singer remarked that he would have supported the parents of his disabled protesters, if they had sought to kill their disabled offspring in infancy. This is the kind of unkind remark that will ensure that his disabled protesters will continue to protest."

Yup. But it's more than the "unkind" remarks. (Telling a group of people that you would support their parents in seeking to kill them in infancy is outrageous, not unkind. )

It's the fact that his entire philosophy places the life of a child with a disability into the hands of another person - because he considers that disabled child not to be worthy of the status of a person.

Peter Singer defends his views on killing disabled babies

Picked this up on the Catholic Social Justice news feed.

I know about Peter Singer . When he first came to teach at Princeton University, members of the disabled community picketed. However, as the article notes, he's a very respected scholar.

Those of us in the disabled community find people like Peter Singer to be very frightening, simply because some of our best friends would have been killed before their lives began. For example, one of my wheelchair tennis friends told me that her parents were told by a doctor that , with her birth defects, a birth certificate wasn't even going to be drawn up. Yet the birth defects did not affect her health , just her appearance. Today she's in her 30's and an accountant with a college degree and a very good job, thank you very much.

Then there are my friends who have spina bifida or CP. Would they all be up for disposal too because they weren't perfect babies? All of them have full time professional jobs and own their own homes.

I make this argument to show how broad generalizations can be wrong and how dangerous it is to make those generalizations. I am not suggesting that only those disabled babies who can achieve certain things deserve to live. I am not willing to make a distinction on the value of human life based on what a person can achieve. No one should have to "earn the right to live". No one should get to decide that a child's IQ or appearance or physical abilities makes him or her unworthy to live.

I am deeply offended by the mere suggestion that a baby with a disability is somehow a disposable member of society. How dare any of us interfere with a life sent into this world by God - on the basis that it doesn't "measure up to" our enlightened standards? These babies cannot speak for themselves, but ask me if my life is worth living with a disability. Would I choose not to live because I am paralyzed? Of course not.

That eliminates the argument that somehow we're doing these poor babies a favor by depriving them of a so-called miserable existence . It is a fallacy that people with disabilities are miserable and unhappy. Many of us live productive and satisfying lives.

But then there is the argument that these babies will be a burden - on their parents, siblings, relatives and society. There are financial considerations. Even if they would choose to live, what right do they have to impose this burden on others? In fact, that's a very short hop to the question:

What right do any of us with disabilities have to live?

Very short hop. If you can hop. Which most of us can't. But those of you who can, take a hop now. And just stand there for a minute and pretend that the social worker who just implied that you don't need services so you can work or the person who just refused to pay you for your professional services because he found out you are in a wheelchair (oops left my checkbook at home)- all of these folks have an ear to the ground that makes them doubt whether we, as people with disabilities, have a right to live equally with others - and then tell me that this doesn't all emanate from a refusal to honor the dignity of every human life.

Because, my friends, it does.

Tuesday, September 12, 2006

Christian Carnival CXXXVIII: The Kingdom Beacon Herald

Check out this wonderful assortment of blog posts! Thanks to Karen Marie for including one of mine.

Be still...

"Be still
and know
that I am God."

Psalm 46:10

Paralysis is a funny thing. It teaches many lessons.

One of them is how to sit still.

I don't mean the literal sense of sitting in a wheelchair and not being able to move my legs. I can get around (probably more quickly than most people who walk) in my wheelchair and, to be honest with you, until someone reminds me of it, I don't think about not being able to walk. Usually that comes up if there's a physical barrier like steps or something I can't quite reach because I'm sitting down.

Paralysis and the sense of being still has more to do with those moments when I am out of my wheelchair - when I get into bed or easy chair or - ahem- the floor. It is then that I realize how paralyzed I am and often I opt to just stay still instead of trying to fight it. I don't struggle to turn over in bed, for example, because it's a complicated manuever requiring a trapeze and dexterity that late at night reminds me of the Flying Wallendas. Instead, I land in bed and - stay still. Or I get into my easy chair and just - stay still.

This may sound frightening to you if you've never been more paralyzed than that feeling you get when you go to the dentist and your mouth gets numbed. At first, I'll admit, I was terrified! But over time I've become used to it. And, like I said, it's taught me many lessons.

One is how to pray and center myself. I feel as if I'm cheating, to be honest, because it's so much easier for me than able bodied people.

If the phone rings, forget it. I'm not moving.
If someone comes to the door, forget it. Not moving.
If the cat knocks something over - well you get the idea.

I'm praying. I'm centering myself. I'm with God. And, yes, I'm paralyzed. But I prefer to think of it as being "still".

It's also very easy to feel humble. God is the Almighty and Powerful and I am still. I cannot even move in his Presence. So I pray. It's a natural progression from that position. It all begins in my heart, where I admit to God that I am powerless and He is all Powerful.

Yes, being paralyzed has taught me many lessons.

Catholic Carnival is up!

Some great 9/11 posts, the theme of prayer and, as always, gratitude for our Faith.

St Jude & Impossible Causes aka Medical Equipment

One of my friends bought an accessible vehicle - about three months ago. She paid for it but hasn't been able to drive it yet because it needed "modifications." So she now owns 2 cars (rather expensive fooling) and has been awaiting the chance to use her new car. She's supposed to pick it up tomorrow - lets all pray nothing (else) goes she can actually use the vehicle!

It amazes me how long it takes to get things done in the world of durable medical equipment. I was told it would take two weeks for them to do an adjustment on my wheelchair that involves a few screws and bolts. When I asked what I was to do in the meantime without my wheelchair, I was told "everyone should have a backup wheelchair!" as if I was somehow - irresponsible for not owning two expensive wheelchairs. I eventually decided to live without the adjustment if it meant having to do without my wheelchair for 2 weeks.

My grandmother used to always tell us to pray to St. Jude whenever we faced an impossible task. So I'm in the habit of invoking his name whenever I have to deal with medical equipment now. This way I figure that I might avoid owning two cars, three wheelchairs, and four pairs of quad gloves. If I'm lucky, my wheelchair cushion might not deflate, my tires won't get holes, my gloves won't wear out just when I'm on my last pair and none of the bolts will fall off of - anything. My shower chair won't crack, my trapeze won't come off of the chain when I'm transferring, my hospital bed won't chug to a 'stuck' position and my special eating utensil won't fall off its handle.

As you can see, even when I touch medical equipment, I've been saying these prayers. I've learned over the years that duct tape is a quad's best friend, but praying can't hurt. I now know that if anything, breaks, cracks, falls, sticks, deflates, tears or otherwise malfunctions, it could take weeks or months to get a part. That's under normal circumstances.

On September 9, 2001, I ordered a wheelchair cushion. It was en route to me, urgently shipped, due to a medical problem I had, commonly known as skin breakdown. (Sadly, this is what led to Christopher Reeve's death). In any event, my cushion wound up in a UPS truck stuck around New York city due to the tragedy at the World Trade Center. When it didn't arrive by September 13, my doctor told me to call UPS and explain I needed the cushion.

I felt terrible with all that was going on. But I was told I could wind up in bed for months if I didn't do it, the cushion was special order and I could not get another one anywhere else, so I called UPS. The woman told me they "had their hands full" and I apologized. She kindly said "No, we actually are only trying to retrieve medical items."

I had the cushion the next morning.

St. Jude. I can hear my grandmother saying that.

Ask Sister Mary Martha: Catholic Guilt

Ask Sister Mary Martha: Catholic Guilt

For a humorous post....check this out!

Monday, September 11, 2006

A Different Light

My news blog. News and views from a rolling laptop - fresh daily!

Disability Studies, Temple U.: Disability Blogs Roundup #13: Back to School edition

Disability Studies, Temple U.: Disability Blogs Roundup #13: Back to School edition

looking for some interesting blogs on the issue of disability? check these out!

Face the Fire a ministry for burn victims organized by Lt Col Birdwell, a survivor of the 9/11 Pentagon attack who has had over 30 operations since his injury.

Their ministry goals are:
To glorify the Lord and Savior, Jesus Christ, in all of our endeavors
To provide financial assistance to the families of burn victims
To financially, and otherwise, assist medical facilities specializing in the research, treatment and care of burn survivors
To help burn survivors and their families understand the rehabilitation process and enable them to live a full, meaningful and productive life after enduring such a tragedy

Please visit his site to read about this wonderful organization.

September 11 News

Let us pray for those lost in the September 11, 2001 attack, and their families and loved ones. Let us also pray for those who serve in Iraq and Afghanistan and the families and loved ones of those who gave their lives.

Sunday, September 10, 2006

Prayer Garden created in memory of September 11th victims

.... by Michael Hartnack, an Eagle Scout at my parish , St. Charles Borromeo in Skillman NJ. Thank you, Michael, for all of your efforts in designing this beautiful garden for our parish.

Not Disabled Enough?

Check out this article in Life IS Full an author with CP whose friend implied *she* was not disabled...enough...Has anyone ever had this experience?

James 2:1 -5

My brothers and sisters, show no partiality
as you adhere to the faith in our glorious Lord Jesus Christ.
For if a man with gold rings and fine clothes
comes into your assembly,
and a poor person in shabby clothes also comes in,
and you pay attention to the one wearing the fine clothes
and say, “Sit here, please, ”
while you say to the poor one, “Stand there, ” or “Sit at my feet, ”
have you not made distinctions among yourselves
and become judges with evil designs?

Listen, my beloved brothers and sisters.
Did not God choose those who are poor in the world
to be rich in faith and heirs of the kingdom
that he promised to those who love him?

The Road Less Handcycled...

Get a bicycle. You will not regret it if you live.”
~Mark Twain, "Taming the Bicycle"

Today I was able to handcycle through a beautiful wooded area with a friend. Leaves have already fallen here in the East and the weather was cool enough so that we were comfortable. The path wound up and down a few hills and I had to stop a few times because of the steepness going uphill. At one point, I turned to my left and saw an old tree with a branch that grew down vertically, ending in a "handle" about three feet off the ground. I showed it to my friend.

The woods were totally silent except for my friend as she shifted on her bike, scrunching some leaves under her tires. We both laughed which stirred up a few small critters.

"Which way should we go?" my friend asked, looking at the 3 different paths that converged near us.

I shrugged, then picked the one that looked to be the bumpiest, happy to be able to go "off-roading " on my handcycle. I get tired of being confined to pavement in my wheelchair! We headed down the path, careening downhill on a winding road that led us back to civilization.

As we rode back home, we had to deal with cars that sped by, an ambulance, a police car with its sirens going - and I already missed the silence and quiet of the woods.

As the police car sped by, lights blazing, my friend said "Gee, I thought they were going to pull us over."

"Nah," I replied. "They have better things to do than to pull over a quadriplegic trying to cycle around."

I haven't had much time lately to stop what I'm doing and go off for time to reflect. That "summer vacation" never happened. Yet I realized, after I arrived home, that handcycling for a few hours down a wooded path was more than enough to rejuvenate me.

I was able to bring back the sense of "being quiet and still".

Although I could have done without the police chase.

See it as a Global Issue - and Network!

When someone asks you if you have a problem with accessibility, have you ever answered "Yes I do and it's a global problem..."?

Probably not. Usually we see our problems from our own point of view and think it's only ours. Sometimes, in fact, we kind of guard our problems, wanting them to be a bit unique and different from everyone else's so we can feel a tad sorry for ourselves. That's okay except all it does is make us feel worse.

Yet I understand the tendency to do this because those of us with disabilities are a diverse group and we are spread out all over the globe. It can be lonely and frustrating to feel as if you are the only one within miles who has your disability- the only kid on your block, so to speak, who has those issues.

But there is a better way to look at problems. If you take a step back, you'll see that we share problems in common even when our disabilities are different. And if you look a bit closer, you'll see that people who have relatives or friends with disabilities may understand. Suddenly you're not feeling as alone. You get a sense of community. When that happens, people get together and work toward solutions. It's a beautiful thing!

So the next time you run into a problem with your disability and think you're all alone, remind yourself that you're dealing with a global problem! You've got lots of company and I bet someone else has some suggestions or help. Don't try to reinvent the wheel. We are going to network our way toward inclusion. Networking is not only cool, doing it at lunch is a great tax deduction!

On the left side of my blog you will see lists of websites. Some are listed under Catholic sites, others are Catholic resources for PWD (people with disabilities), and others are disability sites and blogs. If you don't see what you're looking for, please leave me a comment or email me. I can probably find something to help you out.

I want to thank Karen for her huge efforts yesterday in helping me with my template. She patiently entered each and every site under disability links for us after my attempts to do it with voice recognition and duct tape and a stick failed. Karen, who is an amputee from Australia, has been coming to Wheelie Catholc for weeks now but is too shy to comment. She deserves a round of thanks for doing that job! I truly appreciate it.

Oh and Karen? Now I'm going to want to divide those links into resources and blogs as we get more::::: ducking::::

We think sometimes that poverty is only being hungry, naked and homeless. The poverty of being unwanted, unloved and uncared for is the greatest poverty. We must start in our own homes to remedy this kind of poverty.
– Mother Teresa

"You'll have to get out of the aisle -you're a fire hazard."

While I was googling for articles about siblings of those with disabilities, I found this.

Greg Smith, a wheelchair user, writes in Essence magazine about his experience going to a church where he is told to get out of the aisle because he is a fire hazard.

I can relate. Those same words have been used to me in Catholic churches. When I asked where I should go in my wheelchair, I was told to either get into a pew or leave. "There is no room for a wheelchair," the usher said to me the first time it happened. I was stunned.

And I left. I can't transfer into a pew - and even if I do, without any sides to hold onto, I'd fall over onto the lap of the person next to me, which is not a good look in church. (Although it can be amusing at a party).

But that was the last time I left and the last time I shall ever leave God's House.

As a cradle Catholic, I was filled with a sense of outrage that I was being told to leave a church - it felt like it was not just the building, but the Church. When I tell other Catholics what happened to me, they are appalled. When we are in God's House, even one incident like this is not okay. What I haven't told people is that it didn't happen just once to me - it happened numerous times.

So this morning I find out it happened to Greg Smith, who is writing about his experiences as a black man in his community. And he reports the same stunned reaction as his connection with the Holy Spirit is interrupted by the words "'re a fire hazard."'re in the way....

Where are we to go?

The second and third and fourth time it happened to me, I asked where I could go in my wheelchair and when I was told there was no place, I just stayed put. I realize that if I travel, if I go to a church where I am not known, this can and does still happen. Now I just smile back and say firmly "I'm not going anywhere. I belong here."

i belong. You belong. All God's children belong.

We need to get over these idea that having someone in a wheelchair show up in church is a "big deal". We need to embrace that (thank God) technology allows people with disabilities to be out and about in society and participate and now we have to deal with inclusion issues.

What can be done? We can educate the ushers for one thing. They are the folks who are on the front lines so to speak and represent the Catholic community as a first welcoming committee. ( The clergy won't even know this is an issue unless it is brought to their attention. How do they know what the ushers are saying if we don't speak up?)

Another idea is to prepare for the possibility that a wheelchair user might show up. If there is a genuine concern about someone being in an aisle, set aside a section of seating. There are now pews built that accommodate wheelchairs. A less expensive solution is to use areas of the church where there is room and instruct ushers to seat folks in wheelchairs there.

Let's keep this issue in perspective: it is an awareness and educational issue. It's only a problem in some churches. We can work on this together.

And now I'm going to get ready to go to Mass.

Taking care of the "other kids" - non-disabled siblings

When you have a child with a disability, it isn't just a challenge to parent him or her. It's also a challenge to parent the "other kids" - those who do not have a disability. The balance in the family is thrown off in terms of time and energy at times.

This article highlights some feedback from adults who grew up with siblings with disabilities and offers practical tips and insights for parents. Another opportunity to not have to "reinvent the wheel"! So breathe a sigh of relief that someone else has time to check all of this out and give it a click if you're a parent, relative, friend or teacher who needs this information.