Monday, July 31, 2006

The Invisible Disabilities Advocate

Do you have an invisible disability?

That presents issues that are different than a visible disability. (Click above for a link to The Invisible Disabilities Advocate, a website that provides support.) Some of my friends with invisible disabilities make statements like this:

*I hate when people keep telling me how good I look when I feel so lousy.
*I wish people could see what is wrong.
*People are so judgmental and never cut me a break.

An invisible disability is not easy. Whether you have a chronic condition that is physical or psychological, when people can't see it, a sense of loneliness can result and it can be difficult to get support. This is especially true if you have feelings of guilit or shame about it. Counseling can help you cope better. However we all need to work harder to make more support available in our church community as well.

It does none of us any good to sit around and debate the "chicken and the egg" question of which is worse - a visible or invisible disability. Each presents its challenges and hardships.

The reality is ALL are welcome here. So feel free to join in, comment and express your needs.

Any young Catholic writers out there?

Dappled Things, an online Catholic magazine, is 'trolling for new young writers' according to its website. Click above for link. (I also saw poems and artwork on there.)

Prayer for Healing

Prayer for Healing

O God who are the only source of health and healing, the spirit of calm and the central peace of this universe, grant to me such a consciousness of your indwelling and surrounding presence that I may permit you to give me health and strength and peace, through Jesus Christ our Lord. Amen.

this week at St Charles Borromeo....drum roll please...

The 4th grade class of Religious Formation summer session put together gift bags for Womanspace, a center to assist women in crisis.

The 6th grade class collected food and built a food mountain. The food was donated to the Hillsborough Food Pantry.

I am very proud of all of these kids for their service work to others.

In the news today.....

from the Catholic News...Disabled seek bishops' support for community living act. Members of ADAPT, a disabilty rights group, met with a representative from the U.S. Conference of Catholic Bishops on July 27 to ask for USCCB backing for a federal law to keep people with disabilities in their homes instead of in nursing homes. The law is called the Medicaid Community-based Attendant Services and Support Act, which the demonstrators referred to by the shortened name MiCASSA. It has been introduced in both houses of Congress as S401 and HR 910, the Medicaid Community Attendant Services and Supports Act.

Funding is biased in favor of institutionalization of those with disabilities for Medicaid, preventing people from living in the community and forcing them into nursing homes to get the care they need. This is a serious problem as states cut back on funding provided for in-home living for people with disabilities due to shrinking budgets. Basically, more people will be forced into nursing homes when they lose their state monies for home care. This is despite the fact that community living is more cost-effective, overall, than nursing home care. Additionally, the effect of living in a nursing home is de-humanizing to those with disabilities who are institutionalized against their will.

Members of ADAPT told the USCCB that they sought their backing because they realize the Catholic church has a longstanding commitment to social justice issues. A follow-up meeting was arranged with representatives from USCCB, NCPOD and Catholic Health Ministries.

Members of ADAPT also brought up concerns about lack of accessibility at some churches. Some Catholic members of ADAPT indicated they attend other religious services because their local Catholic church is not accessible.

According to the ADAPT website, there are over 2 million people with disabilities of all ages in nursing homes and other institutions and over 250,000 people in nursing homes want to return to the community .

Their website is located at:

I'm popping a wheelie about this book!

What Adults with Disabilities Wish All Parents Knew,
Reflections from a Different Journey

Edited by
Stanley D. Klein, Ph.D. and John D. Kemp

In the Afterword, Disability Culture, written by Kemp, it is stated that people with disabilities:

*have a heightened acceptance of human differences

* consider interdependence an essential aspect of our lives.

* use humor-the ability to find something funny in almost anything

* have an ability, acquired over time living with our disabilities, to read others’ attitudes and conflicts in order to deal with contradictory social messages.

Sunday, July 30, 2006

Got hope?

Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.”

Helen Keller

For awhile, we all played around with the "Got milk?" ad. I've seen stickers on car windows that say "Got turbo?" "Got boost?" "Got horsepower?"

But to me the most important question is "Got hope?" When we lose hope, we just don't "got" anything else.

Imagine Helen Keller's world. She couldn't see or hear. Her disabilities weren't partial. She was totally deaf and blind. There were dramatic descriptions in the famous movies and plays based on her life of her being trapped in a world of silent darkness , acting like a wild animal and being a creature of pity.

Yet, with the help of a loving and optimistic teacher named Annie Sullivan, who herself was visually impaired, Helen went on to finish college and became an internationally known speaker, writer and advocate for the disabled. In the times she lived, she was reduced to doing vaudeville acts because people were curious about her disabilities. However, she also was friends with Mark Twain and wrote many astounding pieces that foresaw the future of disability rights.

None of this would have been possible without a huge amount of optimism, confidence, sacrifice and hard work. But the first ingredient in the mix is hope.

Maybe you're reading this because you are a person with a disability or you're caring for one who is. Maybe you know someone who has given up hope or maybe you feel as if there's no hope.

It's an illusion if you think there's no hope. People can make extraordinary things happen for each other when we reach out to each other. God is always there, available 24/7 if you reach out to Him. Sometimes, as hard as it is, you have to find the optimism and the hope and have faith that things will get better before you see any results. No matter how bad things may look, that is the road to things getting better.

So the next time you feel the odds are against you ,think about what hope did for Helen Keller.

Photos wheelchair tennis

Here are some pictures of wheelchair tennis athletes in action, posted for folks who are asking what it looks like!

Away from Blog Alert

Ever see wheelchair athletes play basketball, race or play tennis? Wonder what kind of training goes into it?

Some people are surprised to find that athletes in wheelchairs train much the same as those who are not in chairs. We lift weights, push our wheelchairs for aerobic training, handcycle, do sport specific training, have coaches and lessons, and watch our diets. I've been to international tournaments where I saw players from overseas with their own masseuse!

For the next two weekends in August, I'll be competing in wheelchair tennis tournaments on the East coast. I don't have an outfit like the one in this picture to wear, but I have been working on getting myself ready.

There aren't enough quadriplegics signing up so far, so I'll have to put on my duct tape and beat up on paraplegics! I love a challenge.

So I'll be AFB (away from blog) the next two weekends. Wish me luck!

Universally Accessible playgrounds

I received a few emails from people wanting information about how to make playgrounds accessible for children with disabilities. Please click above for a link to an article about Shane's Inspiration park in California and a link to the organization called Shane's Inspiration.

Shane's Inspiration park is a universally accessible playground built in 2000 by the parents of a child who passed away from spinal muscular atrophy. It's considered the prototype for playgrounds for kids with disabilities and since its construction 21 other playgrounds have been planned in California alone based on its model. Places as far away as Israel and India have shown interest.

The best thing about the park is that children with disabilities can play next to kids without disabilities. Some of the equipment is geared toward kids with disabilities but the design is set up to appeal to all children.

Inclusion. It's a wonderful thing.

Happy birthday....

...for Cindy who is homebound! Thanks for emailing me Cindy to tell me about your special day. All of us here at Wheelie Catholic wish you a happy birthday.

Post It Note: Have you flexed your gratitude muscle lately?

So often I hear from friends (with and without disabilities) how discouraged they are, how many problems they have and about why they can't see a way out of their problems.

Maybe I'll run into them a week or so later and I'll ask how the problem is and people will say "Oh that! It's fine now."

I'll say "I bet you're grateful for that."

I often get a funny look and they'll start talking about yet another problem. Sometimes I feel as if they are competing to prove they have the worst problems in the world! But I realize this happens because they are missing a key ingredient- gratitude.

I, too, forget to be grateful a lot of times. I take things for granted when problems pass and things improve. I skip over the part where I bow my head, flex my gratitude muscle and thank God for His help. I don't tell people I am grateful for their help And, worse yet, the more I skip flexing my gratitude muscle, the more likely I am to be negative when another problem comes along.

There is something about practicing gratitude that puts me in a more humble and positive state of being. Why?

It makes me more positive as I realize how much God and others care about me and for me.
It humbles me that God and others care so much about me.
It encourages me spiritually to do for others as others have done for me.
It empowers me to have greater faith.

So why do I still "forget " to do it sometimes? You'd think I would want to stay in gratitude all of the time! Look at all of the wonderful gifts that come from practicing gratitude.

Like my friends, I think I sometimes avoid doing the work involved in being positive and grateful. It's easier to decline into being negative. We are surrounded by a lot of negativity in our world. The news is bad or worse when we put TV on. Gas prices go up, not down. Our jobs get more hectic, not easier. And on and on.

So we have to work at doing something positive. It's an inside job. It takes time and effort to stop ourselves short and go against the negative trend. We have to pay attention to our spiritual state of mind and make the time to simply say "Thank you" to God and others.

As with many spiritual things, the reward far exceeds the effort. But we don't realize that unless we put it into practice. So a gentle reminder to flex our gratitude muscle just doesn't hurt!

"Is anyone among you suffering?
He should pray"
(James 5:13)

Saturday, July 29, 2006

The only thing we have to fear.... fear itself.

Romans 8:15 (New American Standard Bible)

15For you have not received a spirit of slavery leading to fear again, but you have received a spirit of adoption as sons by which we cry out, "Abba! Father!"

Have you ever seen Warm Springs, the HBO movie about the life of Franklin Delano Roosevelt? It addresses his struggle with polio and his efforts to overcome paralysis. It shows the generosity of his spirit as he uses his resources to help others with polio and also portrays his growth through his own fears as he faces his future after realizing he will not walk again as he hoped.

FDR fooled the public by not appearing in his wheelchair, by using metal braces and other devices to appear as if he could stand and walk, but his legs did not heal. He was able to accomplish what he did in his political career by overcoming his fear.

That is true for many of us. God may not remove the physical, mental or emotional difficulty we are experiencing, but through our relationship with GOd as his children, we can overcome our fears.

This isn't to say we won't ever be afraid. Of course we will and it's wrong of us to judge ourselves too harshly. But we can remember, when times are the hardest, that our future with God is all set. No matter what lies ahead of us - illness, treatments, facing that there are no treatments to help us, disability, financial problems, relationship issues - there is no problem that is too big for us when we remind ourselves that God is our father.

Playgrounds for children with disabilities

Have you ever watched a child with a disability sit on the sidelines, unable to participate at a playground? It's one of the saddest and unfairest things about the whole deal handed to a kid who has a disability - that we haven't yet caught up with making playgrounds accessible to all kids.

In the pictures above, you can see that with some changes, playgrounds can be made accessible to wheelchairs. Transfer sections, like the girl in the wheelchair is using, can be installed. Merry go rounds can be placed on level, flat ground so children can get on from wheelchairs. Pathways can be made wider and paved. Swings can be available with belts so that children can ride them even if they lack full trunk control. On and on.

Look around your neighborhood. Are your playgrounds accessible ?

Terminal Illness Resources

Here On The Way To There: A Catholic Perspective On Dying And What Follows
by William H. Shannon

Below is a link to a UK site that discusses the emotions one goes through facing a terminal or life threatening illness. It also gives positive tips for carers and loved ones.

Anxious? You're not alone!

Turn all your anxiety over to God because He cares for you.
I Peter 5:7

"I sought the LORD, and he heard me, and delivered me from all my fears" (Psalm 34:4).

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus" (Philippians 4:6-7).

"Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you" (1 Peter 5:6-7) "Then Jesus said to his disciples: "Therefore I tell you, do not worry about your life, what you will eat; or about your body, what you will wear. Life is more than food, and the body more than clothes. Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds! Who of you by worrying can add a single hour to his life? Since you cannot do this very little thing, why do you worry about the rest?" (Luke 12:22-26, NIV).

As you can see, the Bible is full of passages dealing with anxiety. Clearly God knows that we have fears and anxieties and wants us to turn those over to Him.

I've always loved the passage about the birds. It reminds me that being anxious does nothing to change - anything! A lot of the things I've worried about never even happened. Some of the things that did were not half as bad as I feared. And the rest I obviously succeeded in getting through with God's help.

I don't think ahy of us will ever become super-human and able to feel no anxiety at all. However, we need to remember that the Bible reminds us of two things: we're not alone because God understands our anxieties and, if we are wise, we can take them to Him and cast all our anxiety on God because He cares for us.

That's a pretty good deal if you ask me. Makes me wonder why I forget to do it sometimes!

Friday, July 28, 2006

St Giles, patron saint of disabled

St. Giles was born a wealthy nobleman who used his fortune to help the poor. He lived in a cave as a hermit for several years to avoid followers and to meditate. Legend claims that God sent a hind to provide him with milk as sustenance. A royal hunting party chased the hind into the cave and Giles was wounded in his leg, leaving him lame. The king visited him and sent doctors to care for him, but the wound never fully healed.

The French king built a monastery and Giles became its abbot. A small town eventually surrounded it. Since begging was the only income for many disabled people, Giles' patronage resulted in building hospitals and safe houses for the poor, lepers and disabled.

After Giles' death, his grave became a shrine and the monastery became a Benedictine house.


Here's a great picture of folks on handcycles, which is a bicycle adapted for folks whose legs are paralyzed. Instead of pedaling with your feet, you pedal with your hands. Special adaptations are available for quadriplegics to the C5 level. *

The one on the left is a lower model which is good for those who can transfer onto it. If that is hard for you, there are higher handcycles available, like the one on the right.

Handcycles are a great way to get exercise, have fun bicycling with your friends and spend time outdoors, but not in your wheelchair. Make sure you observe the same safety rules as bicyclists - wear a helmet, stick a safety flag on there if you're in areas where you might be hard to see , and then check out good bike routes or events in your area.

(*Scott at can help you with this- his company has done a lot of hard work in the area and give good advice to quads)

Quad cast of the week: Our favorite Catholic Podcast

featuring The SaintCast above to listen!

This podcast features various saints and does some interesting features on the side - audio tours and other interesting tidbits. Because of its interesting content and appealing style, this podcast wins this week's award.

If anyone is interested in submitting a podcast for next week's award, please email me or leave a comment here! Otherwise the management will choose one.

Popcorn is available in the back of the room.

Worry about doing the wrong thing around people with disabilities? We have more in common than not....

Whenever I speak before parish groups, the bravest audience members ask me questions. The questions always have the same theme – they want to know what my experience is like as a Catholic with a disability.

Here are a few samples:
*How does it make you feel when people talk to you about your disability at church?
*What do you do when people stare at you? How long is it okay to look at someone with a disability?
*Is it okay for people who haven’t met you to just say hello or does that make you feel intruded upon?

People express their fears of “doing and saying the wrong thing” in their questions. I’m always amazed at the depth of these questions. Clearly people have worried about approaching me – and others – with disabilities.

The common theme that runs through these question and answer periods is that we are all yearning for inclusion. Our hearts cry out , after all the Masses and prayers are said and done, after all our works of service are completed, and after all our obligations of the day are met, for unity and community.

Since we all want that, then, why is it so hard? Why do we struggle over the issues so much? Why do we sweat the small stuff and stumble over the bigger issues?

The truth is that I have had probably over a hundred parishioners help me get into my car after Mass and social functions. I suspect, however, that the people who offer help are those who are most confident and don’t worry as much about “doing or saying the wrong thing”. They’re not afraid to ask “Need a hand?” or “want help with that?”

The reality is that there is never a guarantee that interactions will go well. There is always a risk involved. Your help might be turned down – even ungraciously. Your attempt to say hello might be rebuffed or, worse yet, misinterpreted.

For example, I return smiles and greetings rather spontaneously. I don’t worry about how it looks – I’m more concerned about making others comfortable, particularly children. Every now and then, after I’ve sent what I think is a warm smile at someone, I overhear them say “People with low IQ’s are so friendly, aren’t they? It must be nice to have such a simple world.”

I sigh, thinking how such misconceptions can paint us in a corner about something as simple as – being friendly. But I must admit I also smile at these remarks because, to some extent, they are true.

My world has become simpler due to my disability. I have become more able to see peoples’ hearts, more caring, more outgoing and less worried about how I look. I have become better able, although far from perfect, to increase others’ comfort level around me and my disability.

I often think “What would Christ do in my situation? How would He handle being a quadriplegic in community with others?” I don’t believe that Christ would hide away in a corner or angrily reject kind offers of help. Christ would not teach others to treat Him as “less than” or “more than” but as an equal. I believe that Christ would use His circumstances in service of others and would spend time in prayer to find out what God’s will was. I strive to try to attempt this in my life, but it is a constant struggle.

The truth is that, as hard as I may try, I make mistakes all of the time. Sometimes my attempts to fit in or move my wheelchair around make someone angry. They don’t understand that the only thing that is different about me is that I use a wheelchair to “walk”. They may not appreciate that, after being in a wheelchair for 13 years, I don’t want to be the last to leave Mass but want to be included in the stream of people exiting the church. I don’t want to receive Communion from the back as if I am infirm but want to join in the community experience of having Communion at the altar.

Brooke Ellison , a quadriplegic who graduated from Harvard, did a study about “normalizing” peoples’ experiences of the disabled. She found that, after a number of interactions, people began to treat those with disabilities - just like they treated each other! It was a matter of addressing misconceptions and , quite frankly, a matter of seeing the person with a disability as someone with shared interests.

This study should give us all hope. With time, effort and patience, we can learn that we are , indeed, all the same. As members of a spiritual community, we have more in common than not.

There are more things I want to do. I am very blessed that my parish affords me opportunities to be involved. I receive so much that , like everyone else, I want to give back. I want to fully belong in the Church.

I hear from other Catholics with disabilities who want to go to church but find inaccessible physical situations . There may not be a ramp or an accessible bathroom. They may feel unwelcome to participate. They may encounter barriers due to the fears of others – well meaning, but misplaced.

I pray for more wisdom daily . I also pray that all of us as Catholics will find the courage we need to reach out and satisfy our yearning for inclusion with each other.

Thursday, July 27, 2006

Up and Down Tennis

When a wheelchair tennis player and an able bodied tennis player play doubles together, it's called Up and Down Tennis. It's a lot of fun to play because there is one rule that's different for wheelchair tennis players : we get two (not one) bounces of the ball. This means that we can get balls that our partners miss on the first bounce as well as return balls on our side of the court.

If you get a chance to see this sport played, definitely go for it. It's also fun to play - so if you play tennis and would like to play with some wheelchair tennis players, contact the USTA to see if any live near you. It's a great way to practice inclusion- and have fun at the same time!

The REAL medical study....

The clinical features of spasms in patients with a cervical cord injury.

Dr A , Dr B

Department of Rehabilitation, --- Hospital, ---- Country.

A study concerning subjective symptoms of spasms which occur during 24 hours was carried out in 13 quadriplegic patients. All had spasms. Tonic and clonic spasms occurred involving their limbs and trunk. Extensor spasms occurred more often in the lower limbs than in the upper limbs. The duration of spasms was 8 seconds on average and the frequency was 15 times on average per day. The spasms which were severe tended to last longer in duration and were more frequent in occurrence. No spasms occurred without a trigger. The activities in daily living were interfered with by spasms in most patients. Most of these activities also triggered spasms.


How Spasms Affect Quads

authors unable to sign names due to exhaustion (see below)

A study concerning spasms in 13 quads over the course of one day. We placed the 13 quads in one large room with TV monitors to capture each and every spasm. Everyone joined in. What sports. It probably helped that we gave them free pizza. Much jerking and smirking ensued as we noticed more spasming in the legs than the arms which was good since arm spasms can result in embarrassing miscommunications. Although spasms were generally under 8 seconds, the more severe ones lasted longer and were more frequent, occurring more than 15 times a day . This basically fulfilled the theory of Murphy's Law. All spasms were triggered by something or other. In fact, the activities of daily living - dressing, eating, etc - triggered spasms and spasms interfered with the activities of daily living resulting in a symbiotic mess, er mesh, that was something to behold. One subject spasmed as he tried to eat, then dropped his pizza as he spasmed, then spasmed as he tried to change his pants. We finally went in the hall to find a paraplegic to help him when everyone else began to spasm as they tried to assist him.

FINDINGS: Quads seem to have a lot of spasms. Putting them all together in a room was totally ridiculous and we'll never ever do it again. We're exhausted.

And God Said No

I asked God to take away my pride,
and God said, "No."
He said it was not for Him to take
away, but for me to give up.

I asked God to make my
handicapped child whole and
God said, "No."
He said her spirit is whole, her body
is only temporary.

I asked God to grant me patience,
and God said, "No."
He said that patience is a
by-product of tribulation. It
isn't granted, it's earned.

I asked God to give me happiness,
and God said, "No."
He said he gives blessings,
Happiness is up to me.

I asked God to spare me pain, and
God said, "No."
He said, ''Suffering draws you apart
from worldly cares and brings
you closer to me.''

I asked God to make my spirit grow,
and God said, "No."
He said I must grow on my own, but
he will prune-me-to make
me fruitful.

I asked God if he loved me, and God
said. ''Yes.''
He gave me His only Son who died
for me, and I will be in Heaven
some day because I believe.

I asked God to help me love others
as much as he loves me, and
God said,
''Ah, finally, you have the idea.''

Author Unknown

Murderball, the movie

Meet Mark Zupan. He's a quad. He's a wheelchair rugby player. He calls wheelchair rugby "murderball" and he stars in a movie about it.

Click above for a review of it.

Quad : What is a Quadriplegic?

A Quad ATV? No, not that kind of quad!

Definitions of quadriplegic on the Web:

* a person who is paralyzed in both arms and both legs;
* Quadriplegia is caused by damage to the spinal cord at a high level (e.g. cervical spine). The injury causes the victim to lose either total or partial use of the arms and legs. The condition is also termed tetraplegia; both terms mean "paralysis of four limbs". The loss of sensation and movement may not be complete with some sensation and movement being retained in parts of the arms and legs.

We call ourselves "quads".

[Paraplegics, who are paralyzed from the waist down,involving loss of sensation and movement in the legs and in part or all of the trunk, refer to themselves as "paras"]

Quadriplegics can have high or low injuries, depending on where the injury is on the spinal cord. The higher the injury, generally the less function a person will have. Christopher Reeve was a high quad, for example, and needed assistance to breathe.
If you want a good look at low level quads (for the most part) in action, rent the film Murderball. There is a whole range of variations, from loss of finger function, wrist function, etc. As the guys in the film will tell you, people often mistake low level quads as paras.

That's frustrating when you have trouble doing things because your hands are paralyzed and people think you're just holding them up or , worse yet, being lazy by asking for help you don't need.

However, personally, when that happens, I think of the alternative of being a high quad and that makes me grateful to have the confusion.

In fact, it can be fun to pass as a para. If you're clever, you can fool people some of the time. Until you try to eat in front of them or whatever. Or go in your wallet. Or put a key in a door.

When I get "caught" trying to pass as a para, some people look at me and say "Your arms are affected too?" Sometimes people start to cry. I hate that.

I often suspect that they are crying about other unfair things that have happened to them. Not that they don't care about me, but it makes me wonder where that hurt is springing from in them.

I want to say "Go watch Murderball. Then come back and we'll talk."

This "quad" gig is not about feeling sorry for yourself or being depressed or giving up. It's about figuring out how to do as much as you can for yourself with whatever function you're left with.

It can be fun to be a quad if you make it a challenge. Trust me.

And for God's sake, please don't cry.

Poster contest for kids with disabilities age 5 to 18

Hey kids! Click above for a link to a poster contest at United Cerebral Palsy sponsored by Isabelle's Kids* - cool prizes if you win.

*Isabelle’s Kids is a national initiative of United Cerebral Palsy that endeavors to empower children and youth with disabilities to live without limits.

activities of daily living

That's what they call things when you're disabled. ADL's.

So, curious, I googled "quadriplegic cooking". Nothing came up. NADA. Not encouraging.

Then I googled "wheelchair cooking". First thing that comes up is a link to a blog where a paraplegic shows safety tips for people cooking in wheelchairs. (This reminds me of the occupational therapist who, when I asked what I could learn to cook, suggested I first buy a welder's apron and mask. Wisecracker.)

The next link was entitled "Death by wheelchair". (I'm not making this stuff up - I'm on a break from work and don't have time.) What is this - to scare us? If we get hungry enough, that won't work!

I didn't bother to google "quadriplegic changing sheets on bed" "quadriplegic vacuuming" or "quadriplegic taking garbage out" although I am sure there are some low injury quads who can do these things. Google, my friends, doesn't think so, I'm sure.

But if you google "quadriplegic skydiving" you get some information. Ok, so it's tandem. That just means the quad is strapped onto some able bodied (death wishing)umm nice person. It doesn't make sense. That's not an essential activity of daily living, is it? So we can go sky dive and get information about that but can't cook?

On the way back from your sky dive, make sure you quads stop at McDonald's!

(I know for a fact that some quads use the George Foreman grill illegally WITHOUT a welder's mask. But don't tell anyone you heard it here.)

Needs of caregivers

I just got an email from Tom who has ALS. He asked for some info on caregivers and their needs. If you click above it leads you to an excellent series of articles in Catholic 55 Plus on that subject. I used some of their handouts for a talk on caregivers I gave at my parish (the author gives permission to use the quizzes for parish events- please check the copyright limits).

This is an extremely important area of concern for those of us with disabilities that make us physically dependent on others. Our caregivers need to have their boundaries respected, need to be able to communicate with us about what they are/are not comfortable about and need to have their needs met. This can only be accomplished with a good working relationship and lots of boundary setting and self examination on our parts.

I like this series in the link because it gives caregivers some tips and also ways to check what areas need attention in their relationship with their loved one/care recipient. I suggest that Tom's wife look this over as a start so she can maybe bring in more help and get some respite care.

The important thing to realize is, humbling as it is, no one can do everything, even a spouse. Remember, there is a God - and it's not us.

I will have more materials on this topic and email me if you have private concerns and don't wish to post publicly.

Disability Humor

A lot of my friends with disabilities have a wicked sense of humor. I spend almost the entire week of my trips to Ski for Light with visually impaired folks deflecting practical jokes about my wheelchair since I'm the only person in a wheelchair. I'll hear a cane tapping my wheelchair for a few minutes and then a grinning blind person will say,
"Oh, that must be you, Ruth."

Very funny.

I like to ski up on my sitski behind them and their sighted guide and say "Watch out!" as I go past. I see their heads turn slightly, then they grin, wave their ski poles and yell "I'll see YOU later."

And on it goes.

The best part is at the end of the week when I do a "sit down " comedy routine and, of course, include blind jokes. "Throw things," I tell them. "You'll miss me anyway." The local patrons in the bar look aghast at me making fun of the "blind people". The blind audience is, meanwhile, hooting and jeering me. It's quite a scene.

And we love each other very much.

I often wonder if able bodied people would be more comfortable around the disabled if they felt free to join in with, say, "quad jokes", like my good friends do. I think, sadly, people worry so much about saying the wrong thing that they sometimes say nothing at all. I can understand this. Our society is far too concerned with being politically correct and, quite frankly, that pretty much eliminates a sense of humor.

All I know is that this (sometimes) very tired quadriplegic misses her blind friends' ribbing and jokes and would love to have someone stumble into my wheelchair and say
"Oh, that must be you, Ruth."

It's all in good fun.

By the way, the guy in the picture above MUST be a chronic offender for them to lock his wheels for parking in the no parking zone. I've gotten away with it many times. :: grin:::

Faith in any circumstances

The image of Christ praying in the garden of Gethsemane is etched in the mind of every Catholic. But I don't think I reallly thought about the suffering Christ endured until I faced situations in my life where I begged God to change my circumstances and "to take this cup away from me. "

It's easy to feel abandoned when we suffer. There are times when no one can console us - no friend, no relative, no one. When I realized I was never going to walk again, I became terrified. I worried that things would happen I couldn't manage from a wheelchair. I was afraid to be alone. I wanted God to take my paralysis away so that I could feel safe and whole. No matter how I begged God or bargained with Him, nothing changed physically.

I know that it was only then that I began to understand that Christ had modeled for us what to do when we are faced wtih situations that seem impossible or too much for us. We can pray. We can turn to God like Christ did in the garden.

Even though God did not spare Christ his sufferings, He never abandoned him. Once I understood this, a load was lifted off my shoulders. I knew that the problems I faced were not faced alone. God was by my side. I also realized that I could do anything and face anything with God. It was my choice. I could be angry and bitter that I wasn't getting my way or I could accept what had happened and pray for what I needed.

What may appear to be the ultimate act of surrender to God's will is really about trusting that God will always be there no matter what happens. This is the type of faith that frees us to follow the path we are given even when we have fears or reservations. With it we can face any situation.

article for high school students with disabilities...

...about how to prepare for the change to college!

This is an excellent link (click above) to an article written by a gal who works with disabled students at U of Michigan in Ann Arbor. She emphasizes "self reliance" as a coping skill for the transition from high school to college especially because she feels many high schools and parents don't prepare kids for the fact that college programs for the disabled just don't provide the level of service that high schools do.

I also found it to be a great parenting article about how to empower your young adult before he or she leaves the nest. I remember having a blind friend in college who was lost without the help of his mother - and this really made his transition tough. She realized all too late that she had not prepared him at all to do the simplest things for himself when away at college.

Of course all teens go through empower yourself and rely on those brains that got you into college in the first place!

Wednesday, July 26, 2006

Closure of schools for deaf and blind

There are concerns over closing and/or merging schools for the deaf and the blind in many states in the US. (Click above for article link).

Teachers are concerned that these very different disabilities will be lumped together and they will be unable to provide for the students' needs. However, figures show that more parents are choosing to mainstream their children.

Some proposed solutions include shorter residential stays at programs or delay of these closures while other measures are considered .

When needs change, we have to practice good stewardship of the resources we have. If you have any input, feel free to comment or get involved locally.

Do you have (a) passion?

“Science may have found a cure for most evils, but it has found no remedy for the worst of them all--the apathy of human beings.”

Helen Keller

Have you ever felt trapped in your own apathy? It's not a good feeling. People go to great lengths to avoid facing the fact that they feel stuck in their lives - they start overspending, overeating and running away from the main problem.

I've heard professionals say to such people "find a hobby", "find something you like to do". At one time playing wheelchair tennis was the only thing I did that meant much to me. When I was adjusting to being in a wheelchair, it helped me accept that lifestyle and meet others living the same way.

Ultimately, however, I had to find more than something I liked to do. I had to find a passion. It had to be something that meant more to me than anything else and, for me, it had to be a way of helping others.

That passion turned out to be advocating for others with disabilities. I had a lot of signposts pointing me toward it. I met a number of people with disabilities in my life whom I admired greatly. Then I became a quadriplegic. Two of my nephews were diagnosed with different disabilities.

I began to notice that things could be a lot better for people with disabilities. I have a particular concern for our children with disabilities. I watch them developing as human beings as they also struggle to overcome prejudices and discrimination. It is a tough road for them yet I've seen much resiliency and courage in these kids.

I've also met adults with disabilities who have difficulty advocating for themselves. This complicates their lives in heartbreaking ways and marginalizes them in ways that can lead to neglect.

Let's face it - we can't cure some disabilities and illnesses people have yet. But we can overcome our own apathy toward the quality of life they have. We can work toward giving them the dignity we, as Catholics, believe is their birth-right.


“Every kind of peaceful cooperation among men is primarily based on mutual trust and only secondarily on institutions such as courts of justice and police.”

Albert Einstein

Inclusion is not a one way street

How many times in my life I've tried to get my way by insisting that it be "my way or the highway"! I've had to learn, sometimes the hard way, that life and dealing with people is not a one way street.

This blog deals with very sensitive issues. Some of the comments I've been receiving are about experiences disabled people have had - some are good, some are bad. I read some comments this morning from able bodied people who reflected on ways they handle issues around the disabled. Some express a sense of guilt; however, I suspect that they are forgetting there were times they have handled things well and that, as awareness of issues grow, we all realize we need to change more. I think all spiritual people feel that way. I know I've handled situations badly over the years myself - I pray for more patience and strength every day.

It's important to remember that inclusion is a two way street. The frustrating part about it can be that it requires a degree of cooperation and the very places where change may need to happen most may seem most unyielding.

Those of us with disabilities need to remember that we must, even in these situations, continue to carry ourselves with dignity and a sense of responsibility for what we say and do. We can pray for a change of heart in others. We can model the behavior we wish to see. We can speak up and write about it.

We can also express gratitude to people who show a willingness to listen and change.

So thank you to those brave folks who have shared as they read this blog. All I can say is "welcome" as we travel through this life - together.

Tuesday, July 25, 2006

It's a Wonderful World

Ever want to read news that is, well, wonderful? Here's a link to MSNBC's section Wonderful World (if you click above).
You can read about things like chocolate that doesn't melt, an injured bird who received feather implants so he could fly again, a homeless man who returned thousands of dollars of savings bonds he found in a trash can to its owner and was rewarded by others - read to your heart's content!

Pure joy....

on this kid's face. I 've seen it over and over again when I see kids with disabilities play wheelchair sports for the first time. They realize that this is something they can do - and this look comes over their face that is indescribable.

Here it is.

A child's view of inclusion

When I was in kindergarten at St Francis School in Ridgefield Park NJ, there was a little girl in my class who was slower than the rest of us to learn everything. The teacher, an older woman about to retire, became very upset with her.

We had a sliding pond in our classroom. Every day before snack time, the teacher allowed those of us who had been good to slide down as a reward.

Every day, this little girl was not allowed to go down the slide. Instead, she was sent to the corner because she broke one rule or another. “When are you going to learn?” the teacher would ask her as she took her out of line. “When you learn, you ‘ll be allowed to slide down with the rest of the class.”

One day this all became too much for me to watch. I made sure I was behind the little girl in line. When the teacher grabbed her shoulders and began to push her toward the corner, I waved at the little girl, who looked at me with a puzzled expression. I told the teacher “I want to give my turn to her” and pointed at the little girl in the corner.

“You can’t do that,” the teacher said. “Don’t be silly. Take your slide down.”

“It’s my turn and I want to give it to her,” I insisted. I motioned for the little girl to come over to the sliding pond. Hesitating, she walked over toward me.

The teacher said nothing as the little girl climbed up the steps. Then she pushed down the sliding pond, giggling loudly, with an expression of joy on her face. I ran around the front to catch her as she came down. We both were knocked to the ground, laughing.

“Thank you,” the little girl said to me . “ I don’t care if I only go down the sliding pond once – now I know how it feels to be like everyone else!”

The teacher overheard us. She never put that little girl in the corner again at sliding pond time . She took her turn like everyone else in the class, even though she continued to struggle with following the rules.

I never imagined that one day I would become a quadriplegic and face a battle with inclusion myself. It just wasn’t in my life plan.

And yet , why not? Why didn’t it ever occur to me that I could be that little girl with cognitive limitations or grow up to become disabled?

Because even though I considered myself to be open minded on the subject of disability, I too suffered from the illusion that there is an “us-them” dichotomy. Those of us in the first category aren’t disabled like them – and we don’t ever think or foresee that it might happen to us.

I realize now that this distorted thinking is no coincidence. It sprouts from our belief that those with disabilities just are that way because of some reason. Those of us who are not disabled just weren’t “them”. “They” were an other, a different entity.

There were those of us who were allowed to slide down the slding pond because we could understand the rules and then there were those , i.e. them, who were not. At a very young age, I learned one thing – people would not stand up for or say anything about the unfairness of the situation, even though it was unreasonable to expect someone who could not understand the rules to follow the rules. It was like punishing someone who spoke only English for not understanding an instruction given in Japanese.

I didn’t understand until I became a quadriplegic, however, how ingrained our socialization is between those who are disabled and those who are not. It was then that the sense of a class distinction – being treated like a second class citizen – was thrust into my face. At that point, I learned that being disabled wasn’t just hard because I would lose my turn on a sliding pond.

It was hard because I had to struggle just to be included. Gone was the level playing field. I was different, I was physically limited – I was one of “them”.

I realize now that I had no real understanding of what that little girl in my class went through. I gave her my turn on the sliding pond, but I was not able to protect her from the taunts and teasing of our classmates. Over the next few years that we attended the same school, I saw her being excluded from activities that I enjoyed, from classes that I took and from social events that others had.

Each time she was excluded, it became more difficult for her to fit in or catch up with the rest of us. By the time I left that school at the end of 2nd grade, that little girl had been left back and was no longer in my class. It was like a race where she kept running faster and falling further behind.

Although I became disabled in my thirties, well into my own adulthood, the lack of inclusion in our society has impacted my life. The lack of a level playing field, the level of ignorance , the failure to accommodate the simplest physical needs – these combine to make some days very difficult. The Darwinian attitude that the strongest should succeed and other outdated beliefs continue to haunt those of us who deal with mental and physical challenges.

It is ludicrous to debate whether I am different than most people. Of course I am! I’m a quadriplegic. But , then again, paradoxically, I am the same as you. We can form subgroups according to gender or age and take out the variable of being disabled and squeeze me back into a homogenous group . I can be included statistically and I can fit myself into most situations if I try hard enough.

Yet inclusion is about belonging despite my differences. It Is about being able to participate. Spiritual inclusion goes even further. It means to be seen as an equal , as another child of God with the same self worth as anyone else. It is about maximizing the talents given to me in the spiritual service of my Savior and God in an atmosphere that is supportive and respectful about my physical limitations. It is about the freedom to celebrate who I am and realize my own sense of dignity.

disabled Christianity blog

I found this wonderful, warm blog by Professor Jeff McNair, professor of Special Education at California Baptist University.
Please click on the link above to visit it. It's a wealth of information and experiences. The blog is described as a
discussion of issues related to Christianity/theology and persons with disability. It is that and so much more. I want to thank Professor McNair for his dedication and work on behalf of those who cannot speak for themselves...and also for those who can!

How to help people who use wheelchairs

In keeping with today's theme that we are all part of
One Body
click above for a great article with tips!

Need a thumb?

OK so before you get too curious, this is really a thumb drive aka jump drive.

For a quadriplegic like myself who has no finger function, my first thought when I saw it was: what does it do? Is it a thumb I can plug into a USB outlet and wiggle? Will it push buttons for me? Have they finally invented a thumb I can plug into my laptop?

Unfortunately, although computers can really level the playing field for people with disabilities , we're still figuring out how to use robots and machines to replace nonworking body parts.

I used to dwell on what body parts didn't work. Then I realized that one solution was to remember that none of us are expected to be perfect. In fact, the gospels teach us that we are all one body and each of us is just a part of that body. I don't have to mourn the loss of my hands or legs - when I remember that I am just a part of a bigger whole.


Just as each of us has one body with many members, and not all the members have the same function, so too we, through many, are one body in Christ and individually members one of another. [Romans. 12: 4-6]

Monday, July 24, 2006

Life is a great adventure, dare to believe that God will not abandon you.

Pope Benedict XVI to youth April 2006

Do we instill this sense into our youth?

At my parish, St Charles Borromeo, Skillman, NJ, the fifth grade class in the Summer Session of Religious Formation raised awareness of hunger in our area by collecting cereal boxes and building a mountain! (The cereal was donated to the Hillsborough Food Pantry).

I am proud of them for their participation in service work.

If you are a parent, teacher, etc of a child with a disability can you help the child develop positive self regard?

It is very important to address the child's self esteem issues up front. This can be done by emphasizing what the child can do instead of dwelling on what the child can not do. Praise the child for her real skills and positive attributes, but do not hesitate to offer constructive criticism when necessary. Remember if you spoil a child with a disability then you just have a spoiled child with a disability! This does neither you nor the child any good and can harm the child's potential to cope in the future.

It's also important to get the child involved in activities such as wheelchair sports or special camps so that he can see that he is not the only one with a disability. This goes a long way toward decreasing self pity and loneliness. Many kids look forward to these activities since it provides them with a chance to be around people who understand what they are going through in a deeper way. This can also be a good way to find your child an adult mentor with the same disability who can be a positive role model.

Help your child process peoples' reactions to her disability as much as possible. Your child will receive both positive and negative reactions at times. Allow your child to express his feelings, but discourage him from using negative experiences as an excuse to give up trying.

Encourage your child to develop a rich spiritual life. This will help your child in many ways.

Don't forget to encourage your child to have a sense of humor. Taking things too seriously is a phase children go through, but it is particularly important for a child who has a disability to learn to laugh at things that happen when possible. This can defuse many awkward situations.

Sunday, July 23, 2006

How to address children's questions about people with disabilties

I've taught handicapped awareness classes for a number of years in elementary schools with kids as young as 5 or 6 years old. I've found that even one hour spent with a class of children results in a huge improvement in their perception of people with disabilities.

I did a few classes in a team with a young lady who was an amputee and had a prosthetic arm. She would literally remove her arm during her presentation. The children were more curious than afraid and asked very insightful questions. Most asked if another arm would grow, or if she was in any pain, or how she managed to play. They were very loving and concerned about the people with disabilites and full of questions!

What I learned from this is that children's initial reaction to disability seems to fall into one of three categories:

1. Fear: what if it happened to me?
2. Empathy: is the person in pain? can the person play?
3. Curiosity: how does the person do things? will it get better? how did it happen? etc.

Here are a few tips I have learned that parents and adults may want to use with kids:

Answer children's questions about people with disabilities. Don't ignore, change the subject, or punish the child for being curious or asking questions. This can be very damaging since it sends a message of fear to the child about the whole subject.

Let kids know that the way a person looks is never an acceptable reason for teasing or rejecting them. If you hear or see your child behave this way, address the behavior, but don't overreact.

Remember what you do is as important as what you say.

Teach your child how to act around people with disabilities by providing opportunities for them to interact with people who have disabilities.

If your child accidentally runs into a person in a wheelchair or a blind person in the food store, use it as a learning experience instead of ignoring it or yelling at the child. All children need to be taught how to handle themselves around these situations. If the child asks you what's wrong with the person, it is okay to simply state He/she is blind or uses a wheelchair and add would you like to say hello. This encourages the child to see past the disability. Please don't panic when (not if) one of your kids does one of these things, but if your child is old enough to be taught how to handle himself better, use it as a teaching moment.

a poem

I pray
Watching the clouds outside
The large glass windows of our church,
Each cloud a silent witness awaiting
Its own miracle
Of turning inside out
To reveal a silver lining.

My gaze drops to the congregation
As people shuffle past me to pews.
A four year old in a pink dress who is
Dancing behind her parents
Stops to stare at me in my wheelchair.
Her hand goes to her mouth , her eyes grow wide
She asks “Mommy, what’s wrong with that woman?”

I smile.
The little girl blinks at me as her father reaches to pull her away.

I watch
As they go toward the front of the church and file into a pew.

I pray
She has not learned it is wrong to look at people in wheelchairs
I pray
She will be taught to be less afraid of those who are different
I pray
She saw my smile.

What we see depends mainly on what we look for.

13 years ago...

.I became a quadriplegic from injuries in a car accident.

I'm amazed at how every year it feels different. It's a lot easier to deal with now than it was at first. The shock is long gone, the grief, although it remains, is lessened. I've forgiven the person who caused the accident.

But it still hurts.

I'm reminded by close calls that happen or the sound of metal crunching upon metal or - the anniversary date. Yet one thing is clear to me - I'm no longer invested in asking "What if-?" I no longer say to myself "Who would I be if the accident didn't happen?"

The reality is that I'm who I am - the person who has lived 12 years and 364 days (no it hasn't been that bad- that's just semantic!) with my injury. I've changed because of many things.

For example, I use a wheelchair. So I decided to learn to play wheelchair tennis. I made a lot of friends who also use wheelchairs. I traveled to places and met people I never would have met because of this. I learned about teamwork and sportsmanship. I learned that there's always someone else who has it rougher .

I also need to have help from people. This has taught me alot of things about how much pride I had (not the good kind!), how to be more flexible, how to trust people and, mostly, how to be grateful.

I've had to scale down the work I do. This has been frustrating to me at times. However, it's also allowed me to pursue other things with the time I have.

Most of all, I think the biggest change is that I've learned there are no real social classes. People think there are. But they don't exist , at least on a spiritual plane. All of that goes away when your life passes before your eyes, you think you're going to die, then you're left with a serious disability. It's made me pray and think about who I am and who I want to be with the time I have on earth. It's also made me realize how mortal I am and how short a journey we have down here.

Most importantly I've learned that God is always with me. I am never alone. I'm not afraid of much - why should I be?

Catholic author with a disability: Andre Dubus

"To view human suffering as an abstraction, as a statement about how plucky we all are, is to blow air through brass while the boys and girls march in parade off to war. Seeing the flesh as only a challenge to the spirit is as false as seeing the spirit as only a challenge to the flesh. "
Andre Dubus

A Catholic, Dubus was educated by the Christian Brothers before attending college and joining the Marines for six years. He married and had six children and taught at various universities in addition to writing to support his family.

On July 23, 1986, Andre stopped on a highway to help two disabled motorists, saving one's life. He was struck by an oncoming car. His left leg was amputated and his right leg shattered, leaving him in a wheelchair. A writer with many presitigious awards, Dubus went into a deep depression that kept him from writing for years. Eventually he broke through the depression and chronic pain to write two books of autobiographical essays and a collection of short stories. He told others that the accident renewed his Catholic faith and he achieved peace and acceptance as the years went on. He died in 1999.

His collections include: Separate Flights (1975), Adultery and Other Choices (1977), Finding a Girl in America (1980), The Times are Never So Bad (1983), Voices from the Moon (1984), The Last Worthless Evening (1986), Selected Stories (1988), Broken Vessels (1991), Dancing After Hours (1996), and Meditations from a Movable Chair (1998).

Saturday, July 22, 2006

Information about spinal cord injury

Click above for information on spinal cord injuries, if you're interested. The site has some statistics, information and excellent resources.

Saint Faustina


I want to be completely transformed into Your mercy and to be Your living reflection, O Lord. May the greatest of all divine attributes, that of Your unfathomable mercy, pass through my heart and soul to my neighbor.

Help me, O Lord, that my eyes may be merciful, so that I may never suspect or judge from appearances, but look for what is beautiful in my neighbors' souls and come to their rescue.

Help me, that my ears may be merciful, so that I may give heed to my neighbors' needs and not be indifferent to their pains and moanings.

Help me, O Lord, that my tongue may be merciful, so that I should never speak negatively of my neighbor, but have a word of comfort and forgiveness for all.

Help me, O Lord, that my hands may be merciful and filled with good deeds, so that I may do only good to my neighbors and take upon myself the more difficult and toilsome tasks.

Help me, that my feet may be merciful, so that I may hurry to assist my neighbor, overcoming my own fatigue and weariness. My true rest is in the service of my neighbor.

Help me, O Lord, that my heart may be merciful so that I myself may feel all the sufferings of my neighbor. I will refuse my heart to no one. I will be sincere even with those who, I know, will abuse my kindness. And I will lock myself up in the most merciful Heart of Jesus. I will bear my own suffering in silence. May Your mercy, O Lord, rest upon me .

O my Jesus, transform me into Yourself , for you can do all things.

+ + +

St Faustina was charged by Our Lord to show the world His great mercy and to pray the Chaplet, a series of prayers asking forgiveness through the sacrifice of Jesus on the cross, especially on behalf of those souls who are dying. She was told that, every day at 3pm, the hour of Christ's passion on the cross, prayer, even if just for a moment, dwelling on the Lord's mercy was to be said. These instructions were to aid her in spreading word of God's great mercy to others, a mercy that God shows to save us from judgment.

For a link to a site with more information, please click above.

excellent book...

by Henri Nouwen ...Turn My Mourning Into Dancing....about his work with his ministry with the disabled...

Friday, July 21, 2006

"The very pure spirit does not bother about the regard of others or human respect, but communes inwardly with God, alone and in solitude as to all forms, and with delightful tranquility, for the knowledge of God is received in divine silence."

- St. John of the Cross

Pope Benedict XVI : Disabled are fully human....

with full rights.

click above to read the March article in Catholic Online about our Pope's statement.

The Pope emphasized that what is needed is complete insertion of people with disabilities into society at large.

Do you mind if I go in front of you? Uhh, yeah

Disabled people still have to break through the stereotypes. The labels. The red tape. The hassles.

In order to do this, we have to be in the world. We can't do it from our living rooms although it's tempting sometimes.

Those of us in the spinal cord community talk about these things all of the time. We realize that the way we carry ourselves reflects on others in wheelchairs. We have a responsibility to contribute to society and to act in ways that are not only appropriate but, in some instances, require a great deal of patience and maturity. Because it's not easy when you're breaking through new ground.

It requires fortitude. It requires prayer.

When I don't get cooperation from the able bodied world, I persist and pray some more. I read the Bible. I particularly read about the Apostles. They missed Jesus after He left. They were chosen but didn't want to always carry the message. They were treated badly.

It was not a good gig. Paul asked God to take away the "thorn in his side". I know what he meant. I'd like God to take away the metal contraption under my butt.

I've learned to rely on my faith as I fight the good fight and stay in the race some days. I roll away from battles that aren't worth it. I compromise when the alternative means going against my principles.

But I know I can't roll away from this issue. Inclusion is the goal. Those who cannot even speak rely on those of us who can. Rosa Parks didn't say - I'm tired from being at work, let someone else sit here, let someone else break the barrier." Martin Luther King Jr didn't write "I have a dream but who's going to listen?" Christ didn't say "Take this cup from me and if you don't I 'll run away".

Sometimes I think it would be easier to just go out and do one dramatic thing to make a point and have it all over with. Just run my wheelchair up on a flagpole somewhere and scream "Equal rights!" But it doesn't work that way with this. It's a daily gig. I have to be in society as it is, with all the hiccups and flaws, in order to change it. It's going to take time, maybe even generations.

And, the hardest part of all, is I have to try to practice patience, maturity and courage. Almost makes me want to throw a temper tantrum some days. And I do. Because, disability aside, those have never been my strong suits. I wasn't handed a superhero suit when this happened. I've realized its up to me to develop those traits because I now need them. They're no longer a luxury, but a necessity.

I'll think sometimes if one more person goes in front of me in line at the store and then says "Oh I thought you were with someone" or "I have to get back to work, do you mind if I go first?" , I'll scream. I work. I'm busy. What do they think - that I get a check every month to pay my bills?

Well, yeah, they do. Nope. The mailbox is empty. I work. I want to work.

How will perceptions be changed if we don't speak up? We have to let people know who we are. Sometimes that means talking back and taking back our space- claiming that space in line as if we are standing up.

"Yes I do mind. "

And being laughed at. Or glared at in disbelief. Or lectured.

But knowing inside that this is how the change is going to happen.

Thursday, July 20, 2006

The Inalienable Rights of the Disabled

click above for:
Address of Pope John Paul II to the Pontifical Council for Pastoral Assistance to Health Care Workers on the occasion of its Seventh International Conference in Vatican City (November 21, 1993)

For those who can't climb stairs...

...there are chair lifts.

These can be installed on staircases in order to allow elderly and disabled parishioners access to all levels of your church buildings. They are an excellent alternative to solve access issues when it is impractical to install ramps or an elevator.

Self Assessment Tool

Would you like to assess how your parish is handling inclusion issues? Click above for a self assessment from the National Organization on Disability (NOD). As they put it, access begins in the heart.

Learn more!

"Is Everyone Welcome? A Guide to Ministries with Persons with Disabilities," is only one of several helpful pieces contained in a set of resources, "That All May Worship and Serve." Free from the UCC Disabilities Ministries: 800-325-7061.Other pieces contained in the packet include, "The Local Church and the ADA,"

Braille Religious textbooks (for loan):

Religious textbooks are available from Catholic Charities' Services for the Blind and Visually Impaired Persons, 143 Schleigel Boulevard, Amityville, New York11701; telephone (631) 789-5213.

Xavier Society for Blind

154 E. 23rd Street,
New York, NY 10010-4595.
Phone: (212) 473-7800.
Toll-free: (800) 637-9193.
Fax: (212) 473-7801.

• Serves as the National Catholic Press and Lending Library for the visually impaired.
• Offers some Catholic magazines in Braille, and on audio cassette tape.
• Catalogs are available in Braille, large print or on audio cassette.

Our children with disabilities

A wise social worker once told me, when my 18 month old nephew was diagnosed with diabetes, that a child with diabetes was, first, a child. The diabetes was secondary.

I often thought of this over the years as I watched him grow up. When he graduated from high school last month, he looked nothing like the toddler I soothed as we gave him insulin. He has become a tall and handsome young man who enjoys soccer, lacrosse, having a girlfriend, and is looking forward to college in a few months. With diabetes - as a secondary thing.
He was an altar boy in his parish and fully participated at church.

It is my prayer that all children with disabilities have the same opportunities for inclusion that my nephew has had. There were many times his parents acted as his advocate. I know there were struggles. Their hard work was a large factor in his successful navigation through childhood.

But it also is a credit to the community he grew up in . Many people contributed to an atmosphere which helped him thrive. This kind of atmosphere is what we seek to create in our parishes. People with disabilities are different than those with illnesses. Although we sometimes get ill like any person, our main need is to be included so we can live our lives as normally as possible. This creates, as Pope John Paul II said in his adddress at the Jubille of the Disabled, a challenge to everyone.

Perhaps a parishioner with a disability wants a chance to volunteer. Or they may need a ramp or a parking spot so they can come to Mass. There needs to be a delicate balance between seeing people with disabilities as those who "need" and those who can and want to "give back".

With a loving community's help, we can ALL succeed.