Tuesday, May 24, 2005


First off, let me say right now that I understand that Catholic Charities runs several different programs (which vary by diocese) for the developmentally disabled and mentally retarded. I am not saying that we, as Catholics, do nothing for the disabled.

What I am saying, as the mother of a severely developmentally disabled child, is that we do very little on the parish level to deal with the problems faced by families of the disabled. Our parishes are ill-equipped to deal with the issues that a family with a disabled member brings to the table. And I do mean *the* table, the table of Christ. Where, if you believe the music, all are welcome, even the mute, the slow, the deformed, and the lame.

We've been in four different parishes over the past six years. Only one of these had a CCE/RE class that was geared towards the handicapped. It met every other week during the 10am Mass, until it was ended. None of the parishes has had a set of guidelines for administering the sacraments to the disabled. None of the parishes has had special seating for the physically handicapped. None of the parishes had a quiet area where a disabled person might go to calm down if they became distressed. The bathrooms have had the federally-mandated wheelchair-accessible toilet area, but there are no easily accessible sinks, no areas for infants (or older children) to be changed, and they often have poky entrances that would make entering in a wheelchair problematic. We've visited two other parishes, both of which had no cry-room at all, merely, in one case, a narthex where the city's homeless gathered to escape the weather, or, in the other, a noisy echoing marble-floored narthex without any seating.

It is a problem on the parish level, sure. The USCCB shouldn't have to mandate that every parish have good bathrooms or adequae cry-rooms. But the problem is merely a small slice of the larger problem-- we, as Catholics, have not made a stand for the disabled. We have not achieved harmony between the very clear call from Christ to do "for the least of these" and our squeamishness and discomfort with the handicapped.

I cannot tell you how many times I have gotten nasty looks in church when Mere has made a noise or done something odd. I have been blessed in that several people have made an effort to make us feel welcomed by praising Mere or speaking to her, but it is hard to hold on to that peace when the rest of the parish is staring as if at a freak show. I make every effort to keep Mere's disruptions to a minimum-- we usually spend each Mass in the cry-room or in one of the hallways, shuffling between the bathroom and the font and the entrance, depending on her level of restlessness and noisiness. For all her beauty and stature, Mere is truly a 9-month-old in a 9-year-old's body. She will, as babies do, make noises and try to squirm out of the pew.

You cannot tell me, though, that Christ would not want her to be present at his Mass. Christ wants all of his flock to be able to attend. Christ wants all his lambs to be able to participate as much as they can in his sacrifice. It is a miserable shame that the most afflicted among us are the least welcome in our pews. It is, to be sure, a normal and natural human desire to keep things quiet and to maximize the enjoyment of the majority. As Catholics, however, we should be able to rise above the "normal" and "natural" to attain the "good."

One of the problems that I have noticed, time and time again, is that our pew-based seating makes no allowances for wheelchairs. Either the wheelchair must be parked behind the last pew, leaving the occupant sticking out into the narthex alone, or the chair must be parked next to the end of a pew, making movment in the aisles difficult. I find it hard to sympathize with those who spend much time bemoaning the padding on the pews or the variety of kneelers. Families with a wheelchair-bound member want to sit together, too. The wheelchair-bound don't want to be stuck in the vestibule. Stadiums and arenas have ways of integrating wheelchairs into the regular seating, so why can't we use those methods?

Another problem is the lack of a quiet area for the disabled to sit in. I understand that many people abhor "cry-rooms" . . . your hatred might be more intense if you had ever tried to take a handicapped person into one. Leaving aside the parents who snatch their children away as if disability is contagious, they're almost always crowded with whining, squealing, Cheerio-munching, toy-pushing children. It's a high-activity room, and high-activity rooms are bad places in which to try to calm an overstimulated autistic person down-- and also bad places to try to worship. The only alternative is usually a vestibule or a hallway-- and the handicapped person or their attendant are made to miss the Mass because there is no quiet place in which to worship. Churches, you might say, can't afford to build all these expensive accomodations for the disabled. You have to realize, though, that the lack of these services is keeping many people away from Christ. Very often, it is infinitely easier to live without taking the Eucharist than it is to try to attend a Mass with a handicapped person.

Each parish's CCE/RE program is run by volunteers, which often limits their ability to provide services for the handicapped children in the parish. If we can hire non-Catholic musicians to come in to play for us during the Mass, though, I see no reason why we, in our dioceses, cannot hire a consultant to teach the RE teachers how to deal with a disabled child, nor any reason why we cannot hire a teacher or an aide to help a child participate in a regular RE class. There are plenty of college students, teachers, and aides who might not mind getting paid for an extra hour's worth of work per week. Some of them might even be Catholic.

The biggest problem that I see, as the mother of a disabled child, is that the Church's stand on the rights of the disabled has, if anything, been neglected and ignored while we strove to solidify our stance on abortion and homosexuality and euthanasia. The National Catholic Partnership on Disability estimates that there are over 500,000 Catholics who are mentally retarded or cognitively disabled. That's half a million Catholics who are developmentally disabled. That isn't counting the 8.1 million Catholics who are physically impaired, or the 1.3 million Catholics with a sensory impairment, or even the 3.6 million who are disabled by ill health. It doesn't begin to address the concerns of the 700,000 Catholics who suffer from a mental illness, nor the problems that their families face. There are half a million Catholics, alone, who are mentally retarded, autistic, suffer from Down's Syndrome, or who have one of the other cognitive impairments. How many do you see active in your parish? Are their needs being met?

One thing the USCCB ought to address is the sacraments in relation to the disabled. There is no unifying theory about when or if a disabled person should receive the Eucharist, if they are capable of being confirmed, or if they can avail themselves of reconciliation. I have heard a dozen theories, but no official theology or philosophy behind them.

In this era, where the disabled are being discriminated against and murdered from the moment in-utero when their parents find out about their handicaps, we as Catholics need to present a unified front against the culture of death. We need to say that if you don't want your disabled child, we will take it. If you don't want to have to look at disability, send the disabled to us and we will love them. If you want to shuttle them off to institutions, give them to us and we will give them a safe home.

In medieval times, the abbeys and monastaries met a need-- to live and work together in the love of Christ. Now, when death and discrimination loom over the lives of all the disabled, we need to revive that tradition. We need to give them safe places, from our homes to our parishes to, perhaps, a modern version of an abbey or monastery, where the disabled can work and pray together along with devoted Catholics.

We need to see the disabled in our parishes, in our towns, in the public eye. We need to stand up and say that "I am not frightened of death, for my trust is in the Lord. I am not frightened of disability, for my faith is in Him." We need to look at disabled people and say "Hello!" and "Christ be with you!" and have our palpable joy in His love overflow to these poor children of God.

Until that day, we are merely mouthing platitudes. I was frightened, once, of disabled people. It wasn't until God broke my heart apart by presenting me with a magnificent, adorable, terribly weird, and mentally crippled child that I understood that, compared to the angels, we are all handicapped children, mentally crippled and mute. Compared to the splendor of the angels, we are all deformed and twisted. Compared to their remarkable abilities, we are disabled and broken.

And God loves us anyways.